Support organisations
Patient groups and helplines near you, for people with a disease and for their families.
640 organisations in United States
Showing 400 of 420. Choose a country to see them all.
ALS United Greater New York
Nonprofit serving people with ALS and families in Greater New York and New Jersey with free care coordination, support groups, equipment loans, advocacy and research.
For ALS (motor neurone disease)
Visit site: als-ny.orgAlzheimer's Los Angeles
Serves people with Alzheimer's or other dementias and their families in Los Angeles County with a helpline, support groups, care counseling and education.
For Alzheimer disease
Visit site: alzheimersla.orgAlzheimer's Orange County
Provides free care and support services for people affected by Alzheimer's disease and dementia in Orange County.
For Alzheimer disease
Visit site: alzoc.orgAlzheimer's San Diego
Provides care, support and information for individuals and caregivers affected by memory loss in San Diego.
For Alzheimer disease
Visit site: alzsd.orgBeautifully Unblemished Vitiligo Support Group, Inc.
Florida vitiligo support group running in-person meetings in Central and South Florida, school education, mental health resources and information.
For Vitiligo
Visit site: beautifullyunblemished.orgBrain Support Network
California nonprofit founded by caregivers, serving families with LBD, PSP, MSA and CBD through education, brain donation help and a Northern California support group.
For Multiple system atrophy
Visit site: brainsupportnetwork.orgBuffalo Implant Group
Member-run nonprofit in the Buffalo area supporting cochlear implant and hearing aid users and families with meetings, shared experiences and scholarships.
For Hearing loss
Visit site: buffaloimplantgroup.orgCeliac Community Foundation of Northern California
All-volunteer Northern California nonprofit offering support groups, education, advocacy and the free Camp Celiac for people with celiac disease.
For Coeliac disease
Visit site: celiaccommunity.orgCongenital Heart Defect Coalition
Volunteer nonprofit for children and adults with congenital heart defects, offering family support, hospital outreach, family events and scholarships.
For Congenital heart disease
Visit site: chdcoalition.orgCure Multiple Myeloma
Metro Detroit nonprofit offering multiple myeloma patients and caregivers education sessions with doctors, community support and research fundraising.
For Multiple myeloma
Visit site: curemultiplemyeloma.orgDBSA Boston (Depression and Bipolar Support Alliance of Boston)
Volunteer-run non-profit in Belmont, MA offering online and in-person support groups and activities for people with mood disorders and their families.
For Bipolar disorder
Visit site: dbsaboston.orgDown Syndrome Association of Houston
Houston association providing health education, advocacy resources, programmes and events for people with Down syndrome and their families.
For Down syndrome
Visit site: dsah.orgDown Syndrome Association of Los Angeles
Supports people with Down syndrome and their families in Los Angeles with support groups, mentor training, sibling and caregiver groups and programmes.
For Down syndrome
Visit site: dsala.orgEpilepsy Foundation of Northern California
Serves people with epilepsy and caregivers in Northern California with support groups, camps, classes, seizure first-aid training, scholarships and advocacy.
For Epilepsy
Visit site: epilepsynorcal.orgEpilepsy Foundation of San Diego County
San Diego County non-profit serving people with epilepsy and caregivers with support groups, seizure first aid training, scholarships and Spanish programs.
For Epilepsy
Visit site: epilepsysandiego.orgGeorgia Ovarian Cancer Alliance (GOCA)
Georgia (GA) alliance for people with ovarian cancer and families, offering education, awareness, peer-to-peer support, Bag of Hope and resources.
For Ovarian cancer
Visit site: gaovariancancer.orgGMHC
New York City HIV/AIDS service organization offering HIV and STI testing, food, housing support, legal aid, mental health services and advocacy.
For HIV
Visit site: gmhc.orgHD Reach
Nonprofit serving families in North Carolina affected by Huntington's disease, offering connections to medical providers, education, community and a conference.
For Huntington's disease
Visit site: hdreach.orgHDSA Greater New York Chapter
Local New York chapter of HDSA offering free support groups, education days, events and a helpline for people and families affected by Huntington's disease.
For Huntington's disease
Visit site: hdsa.orgHDSA Ohio Valley Chapter
Cincinnati-based local chapter of HDSA serving people affected by Huntington's disease with support groups, education days, newsletters and events.
For Huntington's disease
Visit site: hdsa.orgHDSA San Francisco Bay Area Chapter
Local HDSA chapter in California's Bay Area serving people and families affected by Huntington's disease with support groups, education, events and advocacy.
For Huntington's disease
Visit site: hdsa.orgHemophilia Foundation of Michigan
Michigan foundation serving people with hemophilia and other bleeding disorders through education, camps, advocacy and support services.
For Haemophilia
Visit site: hfmich.orgHemophilia Foundation of Southern California
Serves people with inherited bleeding disorders such as hemophilia in 9 Southern California counties with education, advocacy, support, scholarships and events.
For Haemophilia
Visit site: hemosocal.orgHepatitis C Mentor & Support Group, Inc. (HCMSG)
Serves people affected by hepatitis C and HIV/HCV coinfection with information, support services, Hep C trainings, group guides and webinars.
For Hepatitis C
Visit site: hepatitiscmsg.orgKidney Foundation of Central Pennsylvania
Serves people and families affected by kidney disease in 28 Central Pennsylvania counties with education, peer support, financial aid, a camp and advocacy.
For Chronic kidney disease
Visit site: kfcp.orgKidney Foundation of Northwest Ohio
Toledo-based charity serving 20 Northwest Ohio counties with support, assistance programs, education and advocacy for people with chronic kidney disease.
For Chronic kidney disease
Visit site: kfnwo.orgLes Turner ALS Foundation
US 501(c)(3) foundation serving people with ALS and their families with support services, support groups, equipment loans, education and research funding.
For ALS (motor neurone disease)
Visit site: lesturnerals.orgLos Angeles Dysautonomia Network
Non-profit for dysautonomia patients in LA and California, offering monthly support groups, education and healthcare access grants.
For Postural tachycardia syndrome (POTS)
Visit site: la-dn.orgLupus Colorado
Serves people affected by lupus in Colorado with advocacy, support groups, education, resources and community events.
For Lupus (SLE)
Visit site: lupuscolorado.orgLupus Foundation of America, Greater Ohio Chapter
Ohio chapter serving people with lupus and caregivers, offering lupus information, toolkits, support, patient navigators, educational programs and events.
For Lupus (SLE)
Visit site: lupusgreaterohio.orgLupus LA
Los Angeles non-profit for people with lupus offering support groups, doctor referrals, emergency grants, patient education, conferences and research support.
For Lupus (SLE)
Visit site: lupusla.orgLupus Society of Illinois
Illinois lupus society offering people with lupus support groups, peer support, financial resources, educational events and newsletters.
For Lupus (SLE)
Visit site: lupusil.orgLVADStrong Patient Support Organization, Inc.
Boston-based nonprofit offering free support, mentors, guides and resources to LVAD patients and caregivers across New England.
For Heart failure
Visit site: lvadstrong.orgLyme Connection
All-volunteer Connecticut organisation hosting monthly support groups, patient grants for Connecticut residents, education events and prevention programmes.
For Lyme disease
Visit site: lymeconnection.orgMaine Brain Aneurysm Awareness
Volunteer group in Maine for people affected by brain aneurysms, running a monthly Zoom support group, a family assistance fund and awareness events.
For Brain aneurysm
Visit site: maineba.orgMeningioma Brain Tumor Network, Inc
Maryland nonprofit founded by a meningioma survivor offering advocacy, support groups and webinars for meningioma survivors, caregivers and families.
For Meningioma
Visit site: meningiomabtnetwork.orgMichigan Ovarian Cancer Alliance (MIOCA)
Michigan group offering ovarian cancer survivors and families support groups, resources, awareness events, advocacy and research funding.
For Ovarian cancer
Visit site: mioca.orgMyasthenia Gravis Association (MGA)
Kansas City-based association offering support groups, education, new patient packets and resources for people with myasthenia gravis and their families.
For Myasthenia gravis
Visit site: mgassociation.orgMyasthenia Gravis Foundation of Michigan (MG-MI)
Serves the Michigan myasthenia gravis community with patient support, support meetings, education, newsletters, a provider directory and advocacy.
For Myasthenia gravis
Visit site: mg-mi.orgNational Association for Down Syndrome
Illinois-based association serving the Down syndrome community with a parent support programme, self-advocate programmes, seminars and local support group lists.
For Down syndrome
Visit site: nads.orgNational Capital Lyme Disease Association (NatCapLyme)
Regional association for Lyme and tick-associated diseases with support groups in Maryland, North Carolina, Virginia and Washington, D.C., plus education and grants.
For Lyme disease
Visit site: natcaplyme.orgNational Kidney Foundation of Michigan
Michigan foundation serving people with kidney disease, including CKD, through support groups, peer mentoring, an emergency fund, workshops and education.
For Chronic kidney disease
Visit site: nkfm.orgNew Jersey Carcinoid Cancer NETwork
New Jersey support group for people with carcinoid and other neuroendocrine tumours and their caregivers, offering meetings, information and awareness.
For Neuroendocrine tumours
Visit site: njcarcinoidnetwork.orgNorCal CarciNET Community
Northern California community for people with neuroendocrine tumors and carers, offering support meetings, a patient conference and treatment resources.
For Neuroendocrine tumours
Visit site: norcalcarcinet.orgNorthwest Sarcoma Foundation
Seattle nonprofit giving sarcoma patients and families in the Pacific Northwest education, resources, support and patient grants, and funding research.
For Sarcoma
Visit site: nwsarcoma.orgPennsylvania Tourette Syndrome Alliance (PATSA)
Pennsylvania non-profit for people with Tourette syndrome offering education, support groups, family camps and help for families, schools and communities.
For Tourette syndrome
Visit site: patsainc.orgPOTS of the Seacoast
Volunteer-run support group in Dover, NH for people with POTS and their families, meeting monthly in person.
For Postural tachycardia syndrome (POTS)
Visit site: potsoftheseacoast.comRein in Sarcoma
Minnesota nonprofit for sarcoma patients and families offering peer support, gatherings, a patient guidebook, education and research funding.
For Sarcoma
Visit site: reininsarcoma.orgSickle Cell Disease Foundation
California non-profit supporting people with sickle cell disease and families via counseling, camps, parent education, community health workers and resources.
For Sickle cell disease
Visit site: scdfc.orgSickle Cell Foundation of Georgia, Inc.
Georgia foundation for people with sickle cell disease and families, offering care and support services, education, counseling, advocacy, testing and a camp.
For Sickle cell disease
Visit site: sicklecellga.orgSickle Cell Foundation of Minnesota
Minnesota patient advocacy group for people with sickle cell disease and trait, offering education, advocacy, support groups and financial assistance.
For Sickle cell disease
Visit site: sicklecellmn.orgSickle Cell Foundation, Inc.
Tallahassee, Florida foundation serving people with sickle cell disease and families via advocacy, education, support groups, trait screening and camp aid.
For Sickle cell disease
Visit site: sicklecellfoundation.orgSickle Cell/Thalassemia Patients Network (SCTPN)
Brooklyn, NY non-profit for people with sickle cell disease and thalassemia, offering advocacy, care coordination, support, referrals and community health workers.
For Sickle cell disease, Thalassaemia
Visit site: sctpn.netSouth Carolina Spinal Cord Injury Association
Non-profit serving people with spinal cord injury in South Carolina and their families, with Breeze peer support groups, peer mentoring and education.
For Spinal cord injury
Visit site: scspinalcord.orgThe Myasthenia Gravis Association of Colorado (MGAC)
Denver-based volunteer association serving people with myasthenia gravis and families through education, publications, support groups, chats and research funding.
For Myasthenia gravis
Visit site: 4-mga.orgThe Myasthenia Gravis Association of Western Pennsylvania
Western Pennsylvania association serving people with myasthenia gravis through support groups, a mental health toolkit, newsletters, education and events.
For Myasthenia gravis
Visit site: mgawpa.orgTourette Support & Education
Free support group for people with Tourette syndrome and their families, meeting monthly in Franklin, Wisconsin, with education and resources.
For Tourette syndrome
Visit site: tourettesupport.orgTurner Syndrome Colorado
Colorado community group connecting individuals and families affected by Turner syndrome, with local resources, events and fundraising for a TS clinic.
For Turner syndrome
Visit site: turner-syndrome.orgTurner Syndrome Support of St. Louis
Local nonprofit support group for people with Turner syndrome and their parents in the St. Louis area, offering community and networking.
For Turner syndrome
Visit site: tss-stl.org
Alzheimer's Association – 24/7 Helpline
Free 24/7 helpline of the Alzheimer's Association (800.272.3900) giving information and support on Alzheimer's and other dementias, with a live person by phone.
For Alzheimer disease, Frontotemporal dementia, Lewy body dementia
Visit site: alz.org
Alzheimer's Foundation of America (AFA)
Helpline staffed by licensed social workers (daily 9-21 ET; text 646-586-5283), free virtual memory screenings.
For Alzheimer disease
Visit site: alzfdn.org
American Lung Association - Lung HelpLine
Free line staffed by nurses and respiratory therapists; Lung Health Navigators for people with lung cancer; screening assistance; interpretation in 250+ languages.
For Lung cancer
Visit site: lung.org
National Cancer Institute – Cancer Information Service (CIS)
NCI's contact center: information specialists answer cancer questions from patients, families and the public by phone, chat and email.
For Lung cancer, Pancreatic cancer, Metastatic breast cancer and 30 more
Visit site: cancer.gov#MEAction Network
Find a doctor, find your group, crisis resources, handouts, MEpedia, Stop Rest Pace; branches in the US, UK and Scotland.
For Long COVID and ME/CFS
Visit site: meaction.netA Breath of Hope Lung Foundation
Minnesota-based foundation offering lung cancer patients and families support groups, transportation, education and peer companions, and funding research.
For Lung cancer
Visit site: abreathofhope.org
Acid Maltase Deficiency Association
US nonprofit (AMDA) supporting people with Pompe disease (acid maltase deficiency) and their families, and promoting research.
For Pompe disease
Visit site: amda-pompe.orgAdult Congenital Heart Association
Serves adults with congenital heart disease and their families with a clinic directory, webinars, Heart to Heart peer support and advocacy.
For Congenital heart disease
Visit site: achaheart.orgAIDS United
US national organization investing in communities and championing policy to end the HIV epidemic, centering people living with HIV.
For HIV
Visit site: aidsunited.org
AIM at Melanoma Foundation
Global foundation (est. 2004) working to find more effective melanoma treatments and, ultimately, a cure.
For Melanoma
Visit site: aimatmelanoma.org
ALK Positive
Patient-driven organization dedicated to improving the lives of ALK-positive (mostly lung) cancer patients worldwide.
For Lung cancer
Visit site: alkpositive.org
Allergy & Asthma Network
US nonprofit providing trusted information and support for people with allergies, asthma and related conditions.
For Asthma
Visit site: allergyasthmanetwork.org
Alliance for Headache Disorders Advocacy (AHDA)
US headache advocacy alliance; organises Headache on the Hill.
For Migraine
Visit site: allianceforheadacheadvocacy.orgAlliance of Sleep Apnea Partners (ASAP)
US patient-led nonprofit for people with obstructive sleep apnea, offering education, patient stories, policy advocacy and a yearly Sleep Apnea Education Week.
For Obstructive sleep apnoea
Visit site: apneapartners.orgALS Network
Serves people with ALS and families in California and Hawaii with free care services, support groups, webinars, research funding and advocacy.
For ALS (motor neurone disease)
Visit site: alsnetwork.orgALS United Mid-Atlantic
Supports people living with ALS and their families in PA, NJ and DE with care services, equipment loans, transportation, resources and advocacy.
For ALS (motor neurone disease)
Visit site: alsmidatlantic.orgALS United Rocky Mountain
Serves people with ALS, families and caregivers in Colorado, Utah and Wyoming with care services, support groups, resources, advocacy and research funding.
For ALS (motor neurone disease)
Visit site: alsrockymountain.orgAlzheimer's Association
Free 24/7 Helpline (interpreters for 200+ languages), care consultations with dementia experts, local chapters, Community Resource Finder, ALZConnected online community.
For Alzheimer disease, Vascular dementia
Visit site: alz.orgAmerican Arthritis Foundation
Volunteer-led US organisation offering educational materials, articles, joint quizzes and a doctor locator for people with arthritis, including osteoarthritis.
For Osteoarthritis
Visit site: americanarthritisfoundation.org
American Association of Kidney Patients
US patient-led organization dedicated to improving the lives of kidney patients through education, advocacy and community.
For Chronic kidney disease
Visit site: aakp.org
American Brain Tumor Association (ABTA)
CareLine, a mentor programme for patients and caregivers, an online community and support groups.
For Glioblastoma
Visit site: abta.org
American Cancer Society
Nationwide US nonprofit helping people who face cancer: research, patient services, early detection, treatment information and education, with a cancer helpline on its site.
For Lung cancer, Pancreatic cancer, Metastatic breast cancer and 30 more
Visit site: cancer.org
American Childhood Cancer Organization (ACCO)
24-hour online peer support, resource library and local groups, financial and benefits guides, comfort and medical play kits, education resources and bereavement support.
For Childhood cancers
Visit site: acco.org
American Diabetes Association
US nonprofit fighting diabetes through research, education and advocacy, with information and support for people with type 1 and type 2 diabetes.
For Type 1 diabetes, Type 2 diabetes
Visit site: diabetes.orgAmerican Fibromyalgia Syndrome Association (AFSA)
US nonprofit offering free membership and patient-friendly information on fibromyalgia symptoms, diagnosis, medications and self-help, and funding fibromyalgia research.
For Fibromyalgia
Visit site: fibromyalgiafund.org
American Kidney Fund
US nonprofit fighting kidney disease on all fronts, with financial assistance, education and advocacy for kidney patients.
For Chronic kidney disease
Visit site: kidneyfund.org
American Liver Foundation
National nonprofit promoting education, support and research for the prevention, treatment and cure of liver disease, including liver cancer.
For Liver and biliary tract cancer, Liver cirrhosis, Hepatitis C
Visit site: liverfoundation.org
American Macular Degeneration Foundation
US nonprofit helping people learn about and live with age-related macular degeneration, and supporting research.
For Macular degeneration
Visit site: macular.orgAmerican ME and CFS Society (AMMES)
US national nonprofit serving ME/CFS patients and caregivers through support, advocacy and education, with treatment info, support group listings and a crisis fund.
For Long COVID and ME/CFS
Visit site: ammes.org
American Migraine Foundation
US nonprofit providing education, support and resources for people living with migraine and headache disease.
For Migraine
Visit site: americanmigrainefoundation.org
American Parkinson Disease Association (APDA)
Chapter network and Information and Referral Centers, support group and exercise class finder, virtual events, newly-diagnosed resources.
For Parkinson disease
Visit site: apdaparkinson.org
Amyloidosis Foundation
US nonprofit foundation raising awareness of amyloidosis and providing patient education, support and research funding.
For Amyloidosis
Visit site: amyloidosis.org
Amyloidosis Research Consortium
US nonprofit accelerating the development of and access to new treatments for amyloidosis, with patient resources.
For Amyloidosis
Visit site: arci.orgAortic Bridge
Public charity of aortic patients, survivors, caregivers and clinicians providing support and education for patients and families with aortic disease.
For Aortic aneurysm
Visit site: aorticbridge.orgAortic Hope
Charity founded by aortic disease survivors offering online support groups, patient guides, care packages and awareness work for patients and caregivers.
For Aortic aneurysm
Visit site: aortichope.org
Aplastic Anemia and MDS International Foundation
Foundation supporting patients and families with aplastic anemia, MDS and related bone marrow failure diseases.
For Myelodysplastic syndromes, Aplastic anaemia
Visit site: aamds.org
Arthritis Foundation
The largest US nonprofit dedicated to the prevention, control and cure of arthritis, with support and resources for RA, PsA, axial SpA and lupus.
For Rheumatoid arthritis, Psoriatic arthritis, Ankylosing spondylitis and 3 more
Visit site: arthritis.orgAsbestos Disease Awareness Organization (ADAO)
US nonprofit supporting asbestos victims, including people with mesothelioma, through awareness, prevention education, advocacy for an asbestos ban and story sharing.
For Mesothelioma
Visit site: asbestosdiseaseawareness.orgAssociation of Gastrointestinal Motility Disorders (AGMD)
US nonprofit founded by a patient, serving people with digestive motility disorders such as gastroparesis with education, support groups and a journal.
For Gastroparesis
Visit site: agmdhope.orgAssociation of Migraine Disorders
Research, education and awareness on migraine; webinars, podcast, patient resources.
For Migraine
Visit site: migrainedisorders.org
Asthma and Allergy Foundation of America
The oldest US asthma and allergy patient organization, providing education, support and advocacy, including on eczema (atopic dermatitis).
For Asthma, Atopic dermatitis (eczema)
Visit site: aafa.orgAsthma and Allergy Foundation of America, New England Chapter
Non-profit serving people with asthma and allergies in New England, offering a help line, publications, support groups, training, advocacy and referrals.
For Asthma
Visit site: asthmaandallergies.org
Autism Society of America
US grassroots autism organization creating connections and providing resources, information and an Autism Helpline for the autism community.
For Autism
Visit site: autismsociety.orgAutism Society of North Carolina
Serves autistic individuals and families in North Carolina with education, support groups, clinical services, employment supports and social recreation.
For Autism
Visit site: autismsociety-nc.orgAutism Speaks
US nonprofit promoting solutions across the autism spectrum and throughout the life span, with resources, support and advocacy.
For Autism
Visit site: autismspeaks.org
Autistic Self Advocacy Network
US nonprofit run by and for autistic people, advancing disability rights and self-advocacy for autistic people.
For Autism
Visit site: autisticadvocacy.orgBald Girls Do Lunch
US nonprofit supporting women with alopecia areata through in-person and virtual events, a blog, treatment information and advocacy.
For Alopecia areata
Visit site: baldgirlsdolunch.org
Bateman Horne Center
Non-profit ME/CFS and long COVID clinic (application and annual fee) plus free clinical care guide, crash survival guide, state resource directory, support groups.
For Long COVID and ME/CFS
Visit site: batemanhornecenter.orgBenign Essential Blepharospasm Research Foundation
US foundation for people with blepharospasm and related focal dystonias, offering support groups, a newsletter, an annual symposium and research grants.
For Dystonia
Visit site: blepharospasm.orgBeyond Type 1 (Beyond Type 2 program)
Global nonprofit for people with type 1 and type 2 diabetes, offering education, community, advocacy and help finding affordable insulin in the US.
For Type 2 diabetes
Visit site: beyondtype1.org
Bladder Cancer Advocacy Network
National advocacy organization devoted to advancing bladder cancer research and supporting those affected.
For Bladder cancer
Visit site: bcan.org
Blue Faery (liver cancer / HCC association)
HCC liver cancer charity: free private online patient/caregiver community, one-on-one support, free patient education materials and clinical trial information.
For Liver and biliary tract cancer
Visit site: bluefaery.org
Bone Health & Osteoporosis Foundation
US nonprofit dedicated to preventing osteoporosis and broken bones and supporting people with osteoporosis through education and advocacy.
For Osteoporosis
Visit site: bonehealthandosteoporosis.orgBrain & Behavior Research Foundation
US nonprofit funding research into the causes and treatments of mental illnesses including depression, bipolar disorder and schizophrenia.
For Depression, Schizophrenia, Bipolar disorder
Visit site: bbrfoundation.orgBrain Tumor Companion | Meningioma Companion
US nonprofit run by a meningioma survivor offering online peer support groups, one-to-one sessions, newsletters and resources for brain tumour patients and carers.
For Meningioma
Visit site: braintumorcompanion.com
Brain Tumor Network (BTN)
Free one-to-one navigation: help after a new diagnosis or a recurrence, trial and biomarker searches, second opinions and records.
For Glioblastoma
Visit site: braintumornetwork.org
Breast Cancer Research Foundation
Foundation whose mission is to prevent and cure breast cancer by funding research.
For Metastatic breast cancer, Triple-negative breast cancer
Visit site: bcrf.org
Breastcancer.org
Nonprofit resource for clear, reliable, up-to-date breast cancer information and community support.
For Metastatic breast cancer, Triple-negative breast cancer
Visit site: breastcancer.orgBreatheStrong CF (formerly Cystic Fibrosis Lifestyle Foundation)
US nonprofit for people with cystic fibrosis and families, offering exercise grants, financial assistance, virtual wellness community and education.
For Cystic fibrosis
Visit site: breathestrongcf.org
BrightFocus Foundation
US nonprofit that funds research and provides public information on Alzheimer's disease, macular degeneration and glaucoma.
For Alzheimer disease, Macular degeneration, Glaucoma
Visit site: brightfocus.orgBronchiectasis and NTM Association
Serves people with bronchiectasis and NTM lung disease with an online community, support groups, educational resources, a care center network and a research registry.
For Bronchiectasis
Visit site: bronchandntm.orgC.U.R.E. Childhood Cancer Association
Rochester, NY nonprofit offering families of children with cancer or blood disorders social, emotional, financial and peer Parent Advocate support.
For Childhood cancers
Visit site: curekidscancer.com
Cactus Cancer Society
Young adult cancer resource and community: support programs for people diagnosed with cancer as young adults.
For Lung cancer, Pancreatic cancer, Metastatic breast cancer and 29 more
Visit site: cactuscancer.orgCan Do Multiple Sclerosis
US nonprofit offering free education programs, webinars, exercise resources and support for people living with MS and their care partners.
For Multiple sclerosis
Visit site: cando-ms.org
Cancer Hope Network
Nonprofit providing free one-on-one support to cancer patients and families by matching them with trained volunteers who have had a similar experience.
For Lung cancer, Pancreatic cancer, Metastatic breast cancer and 30 more
Visit site: cancerhopenetwork.org
Cancer Nation
Survivor-led US cancer advocacy organization (formerly the National Coalition for Cancer Survivorship) working on quality cancer care and survivorship resources.
For Lung cancer, Pancreatic cancer, Metastatic breast cancer and 30 more
Visit site: canceradvocacy.orgCandlelighters Childhood Cancer Family Alliance
Supports children with cancer and their families in the Stafford, Texas area with emotional, educational and practical help, parent consultants, camp and events.
For Childhood cancers
Visit site: candle.orgCandlelighters Childhood Cancer Foundation of Nevada
Nevada foundation offering emotional support, quality of life programs and financial assistance to children and families affected by childhood cancer.
For Childhood cancers
Visit site: candlelightersnv.orgCarcinoid Cancer Foundation
Denver-based foundation serving neuroendocrine cancer patients and caregivers with support groups, a support line, peer programs, education and events.
For Neuroendocrine tumours
Visit site: carcinoid.orgCaring Ambassadors Program
US nonprofit giving people with hepatitis C and lung cancer information, health-planning tools, patient stories and weekly news updates.
For Hepatitis C
Visit site: caringambassadors.org
Cervivor
Nonprofit cervical cancer support group and community raising awareness about the disease.
For Cervical cancer
Visit site: cervivor.orgCharcot-Marie-Tooth Association (CMTA)
US nonprofit for people with CMT and families, offering information, local branches, camps, youth programmes, events and research support.
For Charcot-Marie-Tooth disease
Visit site: cmtausa.orgChildren's Alopecia Project
US nonprofit supporting children with alopecia and their families through camps, local support groups, school speaking visits and awareness work.
For Alopecia areata
Visit site: childrensalopeciaproject.orgChildren's Cardiomyopathy Foundation (CCF)
US charity for families of children with cardiomyopathy, offering resources, an online community, specialty-center guidance, webinars and research updates.
For Hypertrophic cardiomyopathy, Dilated cardiomyopathy
Visit site: childrenscardiomyopathy.orgChildren's Neuroblastoma Cancer Foundation (CNCF)
Family-run foundation in Bloomingdale, Illinois, supporting neuroblastoma patients and families with information, a parent handbook, conferences and research support.
For Neuroblastoma
Visit site: cncfhope.org
Cholangiocarcinoma Foundation
Bile duct cancer patient support: one-to-one peer mentors, patient advocate contact, virtual support groups, newly-diagnosed kit, specialist finder and trial information.
For Liver and biliary tract cancer
Visit site: cholangiocarcinoma.orgClaire's Place Foundation
Non-profit offering financial and community support, including a support family network, to children, individuals and families affected by cystic fibrosis.
For Cystic fibrosis
Visit site: clairesplacefoundation.orgCLL Society Inc.
Nonprofit serving chronic lymphocytic leukemia and SLL patients and caregivers with education, support groups, advocacy, clinical trial information and research grants.
For Chronic lymphocytic leukaemia
Visit site: cllsociety.orgCoalition For Headache and Migraine Patients (CHAMP)
Coalition of patient advocacy organisations for headache and migraine.
For Migraine
Visit site: headachemigraine.org
Colon Cancer Coalition
National coalition of staff, volunteers and advocates working to end colorectal cancer deaths by increasing screening and supporting patients.
For Colorectal cancer
Visit site: coloncancercoalition.orgColor of Gastrointestinal Illnesses (formerly Color of Crohn's & Chronic Illness)
US nonprofit serving BIPOC patients and care partners affected by IBD and digestive disorders through community, education, membership, and advocacy.
For Crohn's disease
Visit site: colorofgi.org
Colorectal Cancer Alliance
Live navigator helpline, resources, community support, screening and treatment information.
For Colorectal cancer
Visit site: colorectalcancer.orgConnecting to Cure Crohn's and Colitis
US non-profit offering IBD support groups, mentorship and caregiver circles for people with Crohn's disease and ulcerative colitis, and also funding IBD research.
For Crohn's disease
Visit site: connectingtocure.org
Conquer Myasthenia Gravis
US nonprofit helping myasthenia gravis patients and families with support, education and community.
For Myasthenia gravis
Visit site: myastheniagravis.orgConquering CHD
Conquering CHD is a US nonprofit for people affected by congenital heart disease, offering education, webinars, virtual support groups and advocacy.
For Congenital heart disease
Visit site: conqueringchd.org
Cooley's Anemia Foundation
US nonprofit dedicated to helping people with thalassemia live longer, fuller lives through patient services, education and research.
For Thalassaemia
Visit site: thalassemia.org
COPD Foundation
US nonprofit helping people with COPD live longer and healthier lives through research, education, advocacy and support.
For COPD
Visit site: copdfoundation.orgCOVID-19 Longhauler Advocacy Project (C19LAP)
US patient-led nonprofit serving people with Long COVID and their families through advocacy, education, resources, chapters and support.
For Long COVID and ME/CFS
Visit site: longhauler-advocacy.org
CreakyJoints
Patient community for people with arthritis and rheumatic disease (Global Healthy Living Foundation): support, education, advocacy and research.
For Rheumatoid arthritis, Psoriatic arthritis, Ankylosing spondylitis and 2 more
Visit site: creakyjoints.orgCrohn's & Colitis Foundation
US nonprofit for people with Crohn's disease and ulcerative colitis, with local chapters, volunteer-led support groups and an IBD help line.
For Crohn's disease, Ulcerative colitis
Visit site: crohnscolitisfoundation.org
CURE Epilepsy
US nonprofit epilepsy research organization funding research toward cures and providing information for people affected by epilepsy.
For Epilepsy
Visit site: cureepilepsy.orgCure JM Foundation
Family-powered foundation for juvenile myositis offering a support network, local chapters, family newsletter, town halls and resources, alongside research.
For Dermatomyositis and polymyositis (myositis)
Visit site: curejm.org
Cure SMA
US nonprofit supporting patients and families affected by spinal muscular atrophy and funding SMA research.
For Spinal muscular atrophy
Visit site: curesma.org
CureDuchenne
US nonprofit funding research and providing education and community programs to cure Duchenne muscular dystrophy.
For Duchenne muscular dystrophy
Visit site: cureduchenne.orgCurePSP
New York-based organisation for people affected by PSP, CBD and MSA, offering national virtual and regional support groups, a Hope Line and resources.
For Multiple system atrophy
Visit site: psp.org
CureSearch
Nonprofit identifying and funding the most promising science to bring new treatments to children with cancer.
For Childhood cancers
Visit site: curesearch.orgCushing's Support & Research Foundation
US volunteer foundation for people with Cushing's and their families, offering information, patient stories, a newsletter and monthly support calls.
For Cushing's syndrome
Visit site: csrf.netCystic Fibrosis Research Institute (CFRI)
US nonprofit serving the cystic fibrosis community with research funding, education, advocacy, psychosocial support, wellness classes, retreats and podcasts.
For Cystic fibrosis
Visit site: cfri.orgDCM Foundation
Serves patients and families living with dilated cardiomyopathy with information, webinars, peer networks, gene-specific resources and genetic testing access.
For Dilated cardiomyopathy
Visit site: dcmfoundation.org
Debbie's Dream Foundation: Curing Stomach Cancer
Patient Pathway guidance, monthly support groups, emotional support, nutrition, clinical-trial and biomarker-testing information.
For Gastric and oesophageal cancer
Visit site: debbiesdream.orgDefeat MSA Alliance
Michigan-based charity for people with MSA offering patient programs, a loaner closet, Facebook support groups, assistive communication and education resources.
For Multiple system atrophy
Visit site: defeatmsa.org
DeGregorio Family Foundation for Gastric and Esophageal Cancer
Information on stomach and oesophageal cancers, expert treatment videos and patient stories; mainly funds research.
For Gastric and oesophageal cancer
Visit site: degregorio.orgDementia Society of America
US volunteer-driven nonprofit offering dementia information, caregiver tools and care partner support for all causes of dementia, including vascular dementia.
For Vascular dementia
Visit site: dementiasociety.org
Depression and Bipolar Support Alliance
US peer-led organization offering wellness tips, education and peer support for people living with depression and bipolar disorder.
For Depression, Bipolar disorder
Visit site: dbsalliance.orgDepression and Bipolar Support Alliance California (DBSA California)
California nonprofit offering free support groups, education and community events for people with depression, bipolar disorder and other mental health challenges.
For Bipolar disorder
Visit site: dbsacalifornia.orgDiabetes Youth Families (DYF)
California non-profit offering camps, family retreats, school diabetes education and support groups for children, families and adults with type 1 diabetes.
For Type 1 diabetes
Visit site: dyf.orgDialysis Patient Citizens
Nationwide non-profit, patient-led US organization for dialysis and pre-dialysis patients, offering free membership, education and policy advocacy.
For Chronic kidney disease
Visit site: dialysispatients.org
diaTribe Foundation
US nonprofit bringing patients into the conversation on diabetes, with patient-focused news and education on type 1 and type 2 diabetes.
For Type 1 diabetes, Type 2 diabetes
Visit site: diatribe.orgDysphonia International
Organisation for people with spasmodic dysphonia and related voice disorders, with a support network of local groups, area contacts and virtual meetings.
For Dystonia
Visit site: dysphonia.org
EGFR Resisters
Grassroots, patient-driven community dedicated exclusively to EGFR-positive lung cancer.
For Lung cancer
Visit site: egfrcancer.orgEndo Black, Incorporated
Advocacy organization for African American women and women of color with endometriosis, offering toolkits, a symptom tracker, events and awareness campaigns.
For Endometriosis
Visit site: endoblack.orgEndometrial Cancer Action Network for African-Americans (ECANA)
Serves African American women with endometrial cancer, offering education, a survivor support community, stories, resources and research advocacy.
For Endometrial cancer
Visit site: ecanawomen.org
Endometriosis Association
US self-help organization offering support, education and research funding for women and girls with endometriosis.
For Endometriosis
Visit site: endometriosisassn.org
Endometriosis Foundation of America
US nonprofit increasing awareness of endometriosis, providing education and supporting research and patient advocacy.
For Endometriosis
Visit site: endofound.orgEpilepsy Alliance America
National alliance of member organizations serving people with epilepsy and families, offering seizure first aid training, support groups, camps and advocacy.
For Epilepsy
Visit site: epilepsyallianceamerica.orgEpilepsy Alliance Florida
Serves people and families with epilepsy in Florida, offering case management, support groups, telemedicine, education, psychological services and camp.
For Epilepsy
Visit site: epilepsyalliancefl.orgEpilepsy Foundation of Colorado and Wyoming
Serves people affected by epilepsy in Colorado and Wyoming with education, support groups, camps, mental health and emergency assistance, and advocacy.
For Epilepsy
Visit site: epilepsycoloradowyoming.orgErnest Bhabor Stroke & Aphasia Foundation (EBSAF)
Therapy referrals, financial assistance, peer communities and caregiver tools for stroke and aphasia survivors.
For Stroke
Visit site: ernestbhaborfoundation.orgEsophageal Cancer Action Network (ECAN)
Patient guide on reflux and cancer, support community, nutrition assistant, clinical trials matching, webinars and advocacy.
For Gastric and oesophageal cancer, Barrett's oesophagus
Visit site: ecan.orgEsophageal Cancer Education Foundation (ECEF)
US foundation for esophageal and stomach cancer patients and caregivers, offering free virtual support groups, a hotline, nutrition education and guides.
For Gastric and oesophageal cancer, Barrett's oesophagus
Visit site: fightec.orgFabry Support & Information Group
US nonprofit providing resources, community support and events for people and families affected by Fabry disease.
For Fabry disease
Visit site: fabry.orgFacial Pain Association
US patient organisation for people with trigeminal neuralgia and other neuropathic facial pain, offering support groups, peer mentors, webinars and a journal.
For Trigeminal neuralgia
Visit site: facepain.orgFamilies for Friedreich's Ataxia Foundation
US 501(c)(3) non-profit supporting individuals and families living with Friedreich's ataxia through financial assistance, resources and awareness.
For Friedreich ataxia
Visit site: familiesforfa.com
Family Heart Foundation
US nonprofit (formerly the FH Foundation) helping families with familial hypercholesterolemia and other genetic lipid disorders.
For Familial hypercholesterolaemia
Visit site: familyheart.orgFatty Liver Foundation
US patient-focused nonprofit raising awareness of fatty liver disease (NAFLD/NASH) and cirrhosis, with education and support for patients.
For Fatty liver disease (MASLD/MASH), Liver cirrhosis
Visit site: fattyliverfoundation.orgFibromyalgia Association
US national nonprofit for people with fibromyalgia offering information, education, a virtual support and education group, advocacy and an annual awareness day.
For Fibromyalgia
Visit site: managefibro.orgFibromyalgia Care Society of America, Inc. (FCSA)
US nonprofit providing fibromyalgia care, education and trauma-informed support services for people with fibromyalgia, their families, women and girls.
For Fibromyalgia
Visit site: mycaresocietyofamerica.org
Fight Colorectal Cancer
Education, online community, caregiver and young-adult support, doctor finder, advocacy, events.
For Colorectal cancer
Visit site: fightcolorectalcancer.org
FORCE – Facing Hereditary Cancer Empowered
Nonprofit for people and families facing hereditary cancer (e.g. BRCA): information on gene mutations, risk, and support.
For Ovarian cancer, Metastatic breast cancer, Triple-negative breast cancer and 4 more
Visit site: facingourrisk.org
Foundation Fighting Blindness
US nonprofit driving research for inherited retinal diseases such as retinitis pigmentosa and age-related macular degeneration, with patient information.
For Retinitis pigmentosa, Macular degeneration
Visit site: fightingblindness.orgFoundation for Inherited Arrhythmias (FIA) - formerly SADS
Serves people and families with inherited heart rhythm conditions such as CPVT, Long QT and Brugada, offering patient and family support, support groups and education.
For Ventricular tachycardia
Visit site: fiacardiac.org
Foundation for Women's Cancer
Foundation bringing together advocates, patients, caregivers and care teams to eradicate gynecologic cancers.
For Ovarian cancer, Cervical cancer, Endometrial cancer
Visit site: foundationforwomenscancer.orgGastric Cancer Foundation
Non-profit for people affected by gastric (stomach) cancer, offering patient information, an online community, nutrition resources and research funding.
For Gastric and oesophageal cancer
Visit site: gastriccancer.orgGastroparesis Patient Association for Cures and Treatments (G-PACT)
US patient association for people with gastroparesis and related digestive tract paralysis, offering support groups, webinars, a podcast and awareness events.
For Gastroparesis
Visit site: g-pact.orgGastroparesis: Fighting For Change
US advocacy group of people with gastroparesis running a Facebook advocacy group, patient stories, surveys and awareness campaigns.
For Gastroparesis
Visit site: curegp.orgGaucher Community Alliance
Nonprofit serving people with all types of Gaucher disease and their families through peer support, education, advocacy, resources and networking.
For Gaucher disease
Visit site: gauchercommunity.orgGeneration Lyme
Patient-led nonprofit hosting free virtual Meet-Ups, patient stories, a podcast and resources for people with Lyme and other tick-borne diseases.
For Lyme disease
Visit site: genlyme.org
Genetic and Rare Diseases Information Center
NIH information center (GARD) providing reliable information on genetic and rare diseases to patients and families via website and contact center.
For Glioblastoma, Acute myeloid leukaemia, Hodgkin lymphoma and 32 more
Visit site: nih.govGirls With Guts
A community for women with inflammatory bowel disease and/or ostomies, offering stories, resources, events, retreats, membership and support.
For Crohn's disease, Ulcerative colitis
Visit site: girlswithguts.orgGIST Support International
Patient support organization for people with gastrointestinal stromal tumor (GIST).
For Sarcoma
Visit site: gistsupport.org
Glaucoma Research Foundation
US nonprofit working to cure glaucoma through research, with patient education, doctor finder and support resources.
For Glaucoma
Visit site: glaucoma.orgGlioblastoma Foundation
Foundation whose mission is to transform glioblastoma treatment and research.
For Glioblastoma
Visit site: glioblastomafoundation.orgGlobal Parents for Eczema Research
US non-profit for parents of children with eczema, offering education, a free virtual caregiver support group, podcasts, events and research grants.
For Atopic dermatitis (eczema)
Visit site: gper.orgGluten Intolerance Group (GIG)
US nonprofit supporting people with celiac disease and gluten sensitivity through support groups, kids camps, education and gluten-free certification.
For Coeliac disease
Visit site: gluten.orgGO2 for Lung Cancer
HelpLine (Mon-Fri 9-5 ET), navigation to care, Phone Buddy peer support, Gathering HOPE online group, coping classes.
For Lung cancer
Visit site: go2.orgGout Support Group of America
Patient-led US nonprofit for people with gout, offering an online community, a gout roadmap, educational resources and a newsletter.
For Gout
Visit site: goutsupportgroup.orgHDSA Illinois Chapter
Illinois chapter of the Huntington's Disease Society of America, offering support groups, a state social worker, education days and resources for affected families.
For Huntington's disease
Visit site: hdsa.orgHDSA Wisconsin Chapter
Wisconsin chapter of HDSA serving people affected by Huntington's disease with support groups, a social worker, resources, education and events.
For Huntington's disease
Visit site: hdsa.orgHead & Neck Cancer Alliance
Nonprofit providing resources, support and awareness to prevent, detect and treat head and neck cancer.
For Head and neck cancer
Visit site: headandneck.org
HealthTree Foundation (HealthTree for AML / for Multiple Myeloma)
Free nonprofit platform for AML and myeloma: disease education, specialist and clinical-trial finders, patient navigators, trained patient/caregiver coaches, webinars and meetups (free account for some tools).
For Acute myeloid leukaemia, Multiple myeloma
Visit site: healthtree.orgHearing Loss Association of America
National consumer organisation for people with hearing loss in the U.S., offering education, peer support, 120+ local chapters and advocacy.
For Hearing loss
Visit site: hearingloss.orgHeartBridge Collective
Patient-led US collective for people with heart valve disease and caregivers, offering peer mentor matching, group discussions and experience-based guides.
For Aortic stenosis
Visit site: maryburrell.comHearts of Valor Inc.
Heart-health education, CPR training, free screenings and financial assistance for people affected by CVD.
For Coronary artery disease
Visit site: heartsofvalorinc.comHelp 4 HD International
US nonprofit for families affected by Huntington's disease, offering virtual support groups, a resource database, events, radio/TV programs and meal relief.
For Huntington's disease
Visit site: help4hd.org
Her Heart Sounds
Support programmes helping women recover from heart attacks and other cardiac events (incl. SCAD), return-to-work help.
For Coronary artery disease
Visit site: herheartsounds.org
Hirshberg Foundation for Pancreatic Cancer Research
Foundation (est. 1997) advancing pancreatic cancer research and providing support and information to patients and families.
For Pancreatic cancer
Visit site: pancreatic.orgHodgkin's International
Nonprofit for Hodgkin lymphoma survivors offering connection, education on late effects, survivorship care plans, mental health resources and advocacy.
For Hodgkin lymphoma
Visit site: hodgkinsinternational.orgHope for HS
Volunteer patient and caregiver non-profit for people with HS, running chapter support meetings, a private Facebook group, meetups and webinars.
For Hidradenitis suppurativa
Visit site: hopeforhs.org
Hope for Stomach Cancer (Stomach Cancer Awareness Network)
Support groups, mentor program, free Hope In A Bag kit for newly diagnosed, financial assistance info, nutrition and survivorship guides, webinars.
For Gastric and oesophageal cancer
Visit site: stocan.orgHS Connect
US nonprofit for people with hidradenitis suppurativa and their carers, offering education, support groups, events, a dermatologist finder and clinical trial help.
For Hidradenitis suppurativa
Visit site: hsconnect.orgHuntington's Disease Society of America
US national voluntary health organization for families affected by Huntington's disease: support, education, care centers and research.
For Huntington's disease
Visit site: hdsa.orgHydro with Hope
Non-profit supporting families affected by hydrocephalus with resources, educational materials, emotional support, virtual retreats and a family coaching programme.
For Hydrocephalus
Visit site: hydrowithhope.comHydrocephalus Association
US non-profit for people with hydrocephalus and NPH offering resources for parents, adults and NPH, support, events, a patient registry and research funding.
For Hydrocephalus
Visit site: hydroassoc.orgHypersomnia Foundation
Atlanta-based nonprofit for people with idiopathic hypersomnia and narcolepsy, offering information, a doctor directory, webinars and a patient registry.
For Narcolepsy
Visit site: hypersomniafoundation.orgHypertrophic Cardiomyopathy Association
US nonprofit providing support, advocacy and education for people living with hypertrophic cardiomyopathy (HCM) and their families.
For Hypertrophic cardiomyopathy
Visit site: 4hcm.org
I AM ALS
Patient-led community supporting people living with ALS and caregivers through advocacy, education, community and planning guidance.
For ALS (motor neurone disease)
Visit site: iamals.org
Imerman Angels
Nonprofit offering free one-on-one cancer support and personalized mentoring that connects cancer fighters, survivors and caregivers with someone who has been there.
For Lung cancer, Pancreatic cancer, Metastatic breast cancer and 30 more
Visit site: imermanangels.orgInternational Association of Hidradenitis Suppurativa Network, Inc. (IAHSN)
Non-profit offering HS patients education, advocacy, peer chats, one-to-one mentors, a teen corner, school letters and Medicare guidance.
For Hidradenitis suppurativa
Visit site: iahsn.orgInternational Essential Tremor Foundation
US foundation for people with essential tremor and their families, offering information, support groups, education events, scholarships and research funding.
For Essential tremor
Visit site: essentialtremor.orgInternational Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis)
US foundation for people with autoimmune and autoinflammatory arthritis, including RA, offering education, advocacy, research, podcasts and a patient community.
For Rheumatoid arthritis, Ankylosing spondylitis
Visit site: aiarthritis.orgJoe Beretta Heart Foundation
Provides emergency housing, heart-healthy meals, financial help, hospital visits and caregiver support for heart failure patients at partner hospitals.
For Heart failure
Visit site: thejoeberettafoundation.comKCCure (Kidney Cancer Research Alliance)
Virginia-based nonprofit serving kidney cancer patients with education, patient communities, surveys and peer-reviewed research grants.
For Kidney cancer
Visit site: kccure.org
Kidney Cancer Association
Global community serving and empowering kidney cancer patients and caregivers and leading change through research.
For Kidney cancer
Visit site: kidneycancer.orgKRAS Kickers
Lung cancer research advocacy community for patients with KRAS-mutated cancer.
For Lung cancer
Visit site: kraskickers.org
Let's Win Pancreatic Cancer
Online community on science-based treatments: information, doctor finder, clinical trial finder, research news, survivor stories, webinars.
For Pancreatic cancer
Visit site: letswinpc.org
Leukemia Research Foundation
Need-based financial assistance, peer support, AML guides for newly diagnosed patients, live Q&A sessions and webinars with leukaemia experts.
For Acute myeloid leukaemia
Visit site: leukemiarf.orgLewy Body Dementia Resource Center (LBDRC)
Founded by Norma Loeb, it offers free information, a live helpline and support groups for people with Lewy body dementia and their care partners.
For Lewy body dementia
Visit site: lewybodyresourcecenter.orgLife & Breath Foundation for Sarcoidosis
Maryland-based foundation for people with sarcoidosis and their families, offering support groups, expert webinars, a free patient planner and newsletters.
For Sarcoidosis
Visit site: lifeandbreath.orgLiver Education Advocates
Non-profit running online liver disease support group meetings and one-to-one peer support, including for cirrhosis, for patients and caregivers.
For Liver cirrhosis
Visit site: liveradvocates.org
Living Beyond Breast Cancer
Breast cancer nonprofit with a 'Living with Metastatic Breast Cancer' section, metastatic advocate programme and conference, Breast Cancer Helpline. Number shown is the organisation's footer phone.
For Metastatic breast cancer
Visit site: lbbc.orgLong COVID Campaign
Patient-led US nonprofit advocating for tests, treatments, research and programs for people living with Long COVID, with ways to get involved.
For Long COVID and ME/CFS
Visit site: longcovidcampaign.orgLong COVID Justice
Project by and for chronically ill and disabled people facing Long COVID, offering advocacy, a resource hub, webinars and support groups.
For Long COVID and ME/CFS
Visit site: longcovidjustice.org
Lung Cancer Research Foundation
Foundation funding lung cancer research and providing free patient resources, including biomarker testing guides.
For Lung cancer
Visit site: lungcancerresearchfoundation.org
LUNGevity Foundation
Lung cancer HELPLine (Mon-Fri 9-5 ET), navigation resources, peer mentoring, online communities, virtual meetups.
For Lung cancer
Visit site: lungevity.orgLupus and Allied Diseases Association, Inc. (LADA)
US national non-profit providing education, support, outreach and advocacy for people affected by lupus and allied diseases, and supporting lupus research.
For Lupus (SLE)
Visit site: ladainc.orgLupus Foundation of America
US national force in the fight against lupus: health education, support services, advocacy and research for people with lupus.
For Lupus (SLE)
Visit site: lupus.org
Lupus Research Alliance
The world's largest non-government funder of lupus research, also offering information for people with lupus.
For Lupus (SLE)
Visit site: lupusresearch.org
Lustgarten Foundation
Largest private funder of pancreatic cancer research; also offers patient and family resources.
For Pancreatic cancer
Visit site: lustgarten.orgLymeDisease.org
National US Lyme disease organisation offering online support groups, a symptom checklist, The Lyme Times, the MyLymeData registry and advocacy.
For Lyme disease
Visit site: lymedisease.orgMacular Degeneration Association
US non-profit offering people with age-related macular degeneration education, videos, brochures, a newsletter, conferences and coping resources.
For Macular degeneration
Visit site: macularhope.org
Malecare
Men’s cancer support nonprofit publishing prostate cancer news, treatment and side-effect information.
For Prostate cancer
Visit site: malecare.orgMassachusetts Down Syndrome Congress
Massachusetts organisation offering information, support groups, events and advocacy for people with Down syndrome and their families.
For Down syndrome
Visit site: mdsc.orgMassachusetts ME/CFS & FM Association
Massachusetts non-profit serving people with ME/CFS, fibromyalgia and Long COVID, offering membership, peer support, a provider database, events and advocacy.
For Long COVID and ME/CFS
Visit site: massmecfs.orgMD Support (Macular Degeneration Support Inc)
US nonprofit offering free information, personal assistance, guides and support-group resources for people with macular degeneration and related retinal diseases.
For Macular degeneration
Visit site: mdsupport.orgMDS Foundation
US-based global nonprofit supporting patients with MDS and related diseases such as AML, their families and providers, with education, resources and support.
For Myelodysplastic syndromes
Visit site: mds-foundation.orgMelanoma Research Alliance
Nonprofit leader in melanoma research funding, accelerating new diagnostics and treatments.
For Melanoma
Visit site: curemelanoma.orgMended Hearts, Inc.
Peer support, heart-health education and advocacy through local chapters and hospital visiting programmes.
For Coronary artery disease
Visit site: mendedhearts.orgMeningioma Mommas
US nonprofit offering resources and a community for meningioma patients, caregivers and families, and funding meningioma-specific research.
For Meningioma
Visit site: meningiomamommas.org
Mental Health America
US community-based nonprofit promoting mental health, offering screening tools, information and support for conditions such as depression, bipolar disorder and schizophrenia.
For Depression, Schizophrenia, Bipolar disorder
Visit site: mhanational.org
Mesothelioma Applied Research Foundation
Nonprofit funding mesothelioma research and providing patient support and education.
For Mesothelioma
Visit site: curemeso.orgMetastatic Breast Cancer Network
Patient-led network dedicated to people living with metastatic breast cancer: education, awareness and support.
For Metastatic breast cancer
Visit site: mbcn.org
METAvivor
Metastatic breast cancer nonprofit: peer support groups, clinical trial information, advocacy, research grants.
For Metastatic breast cancer
Visit site: metavivor.orgMIB Agents
Nonprofit serving pediatric osteosarcoma patients and families with education resources, a handbook, support programs, a conference and research grants.
For Sarcoma
Visit site: mibagents.orgMichigan Spinal Cord Injury Association (MSCIA)
Michigan chapter of United Spinal for people with spinal cord injury and disease, providing community resources, support group listings, advocacy and education.
For Spinal cord injury
Visit site: mispinalcord.orgMiles for Migraine
Non-profit improving lives of migraine patients, raising awareness and funding research.
For Migraine
Visit site: milesformigraine.orgMinnesota Spinal Cord Injury Association (MNSCIA)
Association for people in Minnesota affected by spinal cord injury or paralysis, offering education, advocacy, networking and a monthly peer group.
For Spinal cord injury
Visit site: mnscia.orgMission MSA
US nonprofit for people with MSA and their families, offering a support hotline, support group finder, MSA Connect online community and resources.
For Multiple system atrophy
Visit site: missionmsa.org
MPN Advocacy & Education International
Nonprofit providing education and advocacy for people living with myeloproliferative neoplasms.
For Myeloproliferative neoplasms
Visit site: mpnadvocacy.comMPN Cancer Connection
Non-profit charity for people with myeloproliferative neoplasms (PV, ET, MF), offering patient guides, an MPN specialist finder, news and advocacy resources.
For Myeloproliferative neoplasms
Visit site: mpncancerconnection.orgMPN Education Foundation
Volunteer-run nonprofit for people with myeloproliferative neoplasms, offering disease information, the MPN-NET online support group, and conferences.
For Myeloproliferative neoplasms
Visit site: mpninfo.org
MPN Research Foundation
Foundation funding research into myeloproliferative neoplasms and supporting the MPN patient community.
For Myeloproliferative neoplasms
Visit site: mpnresearchfoundation.org
Multiple Myeloma Research Foundation (MMRF)
Patient Navigation Center by phone Mon-Fri 9am-7pm ET, myeloma mentors, financial and transportation support resources, clinical trial finder, patient toolkit and summits.
For Multiple myeloma
Visit site: themmrf.org
Multiple Sclerosis Association of America (MSAA)
Toll-free helpline and chat, cooling and equipment products, MRI Access Program, educational programmes and webinars.
For Multiple sclerosis
Visit site: mymsaa.org
Multiple Sclerosis Foundation
US nonprofit providing free support services, education and assistance programs for people with multiple sclerosis.
For Multiple sclerosis
Visit site: msfocus.org
Muscular Dystrophy Association
US nonprofit advancing research, care and advocacy for people living with muscular dystrophy, ALS and related neuromuscular diseases.
For ALS (motor neurone disease), Spinal muscular atrophy, Duchenne muscular dystrophy and 3 more
Visit site: mda.org
Musella Foundation for Brain Tumor Research & Information
Foundation giving brain tumor patients and families emotional and financial support, treatment information and research funding.
For Glioblastoma
Visit site: virtualtrials.org
Myasthenia Gravis Foundation of America
The largest US patient advocacy organization solely dedicated to myasthenia gravis: support, education and research funding.
For Myasthenia gravis
Visit site: myasthenia.orgMyositis Support and Understanding Association
All-volunteer, patient-led US nonprofit offering education, support groups, advocacy, clinical trial matching and need-based financial assistance for myositis.
For Dermatomyositis and polymyositis (myositis)
Visit site: understandingmyositis.orgNarcolepsy Network
Narcolepsy Network is a US nonprofit supporting people with narcolepsy and related sleep disorders through peer-led support groups, webinars and a yearly conference.
For Narcolepsy
Visit site: narcolepsynetwork.orgNational Adrenal Diseases Foundation
US non-profit for people with adrenal diseases, offering a Cushing's disease support group, an online Inspire community and statewide support groups.
For Cushing's syndrome
Visit site: nadf.usNational Alliance of State Prostate Cancer Coalitions (NASPCC)
Alliance of state prostate cancer coalitions offering patient education, webinars, an online support group, advocacy and help finding or starting local coalitions.
For Prostate cancer
Visit site: naspcc.org
National Ataxia Foundation
US nonprofit empowering people affected by ataxia, including Friedreich's ataxia, with education, support groups and research.
For Friedreich ataxia
Visit site: ataxia.orgNational Autism Association
US association serving autistic people and their families with safety resources, free toolkits, webinars, communication access and support group links.
For Autism
Visit site: nationalautismassociation.org
National Bleeding Disorders Foundation
US nonprofit (formerly National Hemophilia Foundation) committed to curing blood and bleeding disorders and empowering people with hemophilia.
For Haemophilia
Visit site: bleeding.org
National Brain Tumor Society (NBTS)
A support and navigation team, online support conversations and a toolkit with a trial finder.
For Glioblastoma
Visit site: braintumor.orgNational Breast Cancer Foundation
Foundation providing early detection screenings, breast health education and support for those facing breast cancer.
For Metastatic breast cancer, Triple-negative breast cancer
Visit site: nationalbreastcancer.orgNational Celiac Association
US nonprofit in Needham offering education, advocacy and support groups for people with celiac disease or gluten sensitivity and their families.
For Coeliac disease
Visit site: nationalceliac.org
National Cervical Cancer Coalition
Nonprofit providing information and support for people with or at risk of cervical cancer and HPV-related disease (a program of ASHA).
For Cervical cancer
Visit site: nccc-online.orgNational CMV Foundation
US nonprofit uniting families, clinicians and policymakers on congenital CMV, offering prevention information, family stories, podcasts and awareness awards.
For Cytomegalovirus infection
Visit site: nationalcmv.orgNational Council on Severe Autism
US charity serving individuals with severe autism, their families and caregivers through policy advocacy, research promotion, resources and community.
For Autism
Visit site: ncsautism.orgNational Down Syndrome Congress
US national organisation for people with Down syndrome and their families, offering resources, webinars, a convention and policy advocacy.
For Down syndrome
Visit site: ndsccenter.orgNational Down Syndrome Society
National organisation for people with Down syndrome offering resources, education, employment and health programmes, advocacy and a helpline.
For Down syndrome
Visit site: ndss.org
National Eczema Association
US nonprofit improving the health and quality of life of people with eczema, including atopic dermatitis, through education, support and research.
For Atopic dermatitis (eczema)
Visit site: nationaleczema.orgNational Fibromyalgia Association
US nonprofit founded by a fibromyalgia patient that educates, empowers and encourages people with fibromyalgia and runs awareness campaigns.
For Fibromyalgia
Visit site: fmaware.org
National Gaucher Foundation
US nonprofit supporting people with Gaucher disease through education, financial assistance programs and research.
For Gaucher disease
Visit site: gaucherdisease.org
National Kidney Foundation
US nonprofit dedicated to people with or at risk of kidney disease: education, patient support, NKF Cares helpline and research.
For Chronic kidney disease
Visit site: kidney.org
National Kidney Foundation of Hawaii
Health classes, workshops and kidney/diabetes prevention and chronic-illness self-management programmes, patient support services.
For Chronic kidney disease
Visit site: kidneyhawaii.orgNational Leiomyosarcoma Foundation
Supports leiomyosarcoma patients, families and caregivers with education, phone support, a buddy program, advocacy and research funding.
For Sarcoma
Visit site: nlmsf.org
National Ovarian Cancer Coalition (NOCC)
Information line, peer support groups, practical help (meal delivery, financial assistance), education.
For Ovarian cancer
Visit site: ovarian.orgNational Pancreatic Cancer Foundation (NPCF)
US nonprofit supporting pancreatic cancer patients and families with education, financial assistance, clinical trial connections and integrative therapies.
For Pancreatic cancer
Visit site: npcf.us
National Pediatric Cancer Foundation
Foundation funding research toward less toxic, more effective treatments for pediatric cancer.
For Childhood cancers
Visit site: nationalpcf.org
National Psoriasis Foundation
US nonprofit helping people with psoriasis and psoriatic arthritis get treatment, with patient navigation, education and research.
For Psoriasis, Psoriatic arthritis
Visit site: psoriasis.orgNational Scleroderma Foundation
US patient advocacy foundation for people with scleroderma, offering education, support groups, a HOPE Line, local chapters and research grants.
For Systemic sclerosis (scleroderma)
Visit site: scleroderma.orgNational Spasmodic Torticollis Association
Membership association for people with spasmodic torticollis/cervical dystonia in the US, offering support groups, webinars, information and meetings.
For Dystonia
Visit site: cdtorticollis.orgNational Viral Hepatitis Roundtable (NVHR)
National coalition centring people with lived experience, advocating for access to viral hepatitis prevention and care and running the Voices4Hep network.
For Hepatitis C
Visit site: nvhr.orgNational Vitiligo Bond Inc., Foundation
US vitiligo foundation offering a Facebook forum, mentoring and youth coaching programmes, awareness campaigns and resources for the vitiligo community.
For Vitiligo
Visit site: vitiligobond.orgNebraska Chapter of the National Bleeding Disorders Foundation
Nebraska chapter serving people and families with bleeding disorders such as hemophilia, offering education, advocacy, camps, programs and financial assistance.
For Haemophilia
Visit site: bleeding.orgNephCure
US non-profit for people with rare kidney diseases such as IgAN and FSGS, offering patient navigation, support groups, resources, advocacy and research funding.
For IgA nephropathy
Visit site: nephcure.org
Neuroblastoma Children's Cancer Society
Nonprofit whose mission is to cure neuroblastoma and related childhood cancers and to support affected families.
For Neuroblastoma, Childhood cancers
Visit site: neuroblastomachildrenscancersociety.orgNeuroendocrine Cancer Awareness Network (NCAN; formerly Carcinoid Cancer Awareness Network)
Serves neuroendocrine (NET) cancer patients with a hotline, support groups, information packets, conferences, a podcast and awareness activities.
For Neuroendocrine tumours
Visit site: netcancerawareness.orgNeuroendocrine Cancer Foundation
Foundation offering resources and a supportive community for neuroendocrine cancer patients.
For Neuroendocrine tumours
Visit site: ncf.net
Neuroendocrine Tumor Research Foundation
Foundation funding neuroendocrine cancer research and offering expert information for patients.
For Neuroendocrine tumours
Visit site: netrf.orgNevada Chapter of the National Bleeding Disorders Foundation
Nonprofit serving Nevada people and families affected by bleeding disorders such as hemophilia, offering education, advocacy, camps, events and financial assistance.
For Haemophilia
Visit site: bleeding.orgNew Jersey Center for Tourette Syndrome
New Jersey non-profit offering youth and adult programmes, a monthly parent support group, referrals and education on Tourette syndrome.
For Tourette syndrome
Visit site: njcts.org
NMDP (Be The Match) Patient Support Center
For patients needing a stem cell transplant: one-to-one patient navigators, financial assistance, group sessions and peer connection.
For Acute myeloid leukaemia
Visit site: nmdp.org
No Stomach For Cancer
One-on-one support, caregiver resources, gastrectomy nutrition and tips, genetic counselling access, global patient communities.
For Gastric and oesophageal cancer
Visit site: nostomachforcancer.orgNorthern California Amyloidosis Support Group
Northern California support groups for people with amyloidosis and their families, offering free quarterly meetings with experts and disease information.
For Amyloidosis
Visit site: patientsupportgroup.orgNTM Info & Research
Nonprofit formed by and for patients with bronchiectasis and NTM lung disease, offering information, online and local support groups and advocacy.
For Bronchiectasis
Visit site: ntminfo.org
Obesity Action Coalition
US nonprofit dedicated to giving a voice to individuals affected by obesity through education, advocacy and support.
For Obesity
Visit site: obesityaction.orgOurBrainBank
Patient-led nonprofit for people with glioblastoma and care partners, offering guidance, advocacy, patient stories and patient-powered data collection.
For Glioblastoma
Visit site: ourbrainbank.org
Ovarian Cancer Research Alliance (OCRA)
Patient support team, Woman to Woman peer mentors, Staying Connected support series, 1:1 counselling, genetic testing programme.
For Ovarian cancer
Visit site: ocrahope.orgPA Lyme Resource Network
Pennsylvania network offering support groups, a Lyme doctor referral list, a young adult social group, patient conferences and the Dare 2B Tick Aware prevention programme.
For Lyme disease
Visit site: palyme.org
Pancreatic Cancer Action Network (PanCAN)
Free one-to-one Patient Services: personalised information on treatment, trials and support.
For Pancreatic cancer
Visit site: pancan.orgParent Project Muscular Dystrophy
US nonprofit fighting to end Duchenne muscular dystrophy through research, care, advocacy and family support.
For Duchenne muscular dystrophy
Visit site: parentprojectmd.orgParkinson & Movement Disorder Alliance (PMD Alliance)
US nonprofit for people affected by Parkinson's and other movement disorders, offering webinars, resource libraries, support communities and provider education.
For Parkinson disease
Visit site: pmdalliance.org
Parkinson's Foundation
Helpline in English and Spanish (Mon-Fri 9-19 ET), referrals to PD-trained professionals, support groups and exercise classes, information packets.
For Parkinson disease
Visit site: parkinson.orgPCOS Awareness Association
Nonprofit offering PCOS/PMOS information, an online community, and programmes for teens, partners and male allies, plus advocacy tools.
For Polycystic ovary syndrome
Visit site: pcosaa.orgPCOS Challenge: The National Polycystic Ovary Syndrome Association
Supports women with PCOS through TV and radio programmes, workshops, online and offline support networks, grants and advocacy.
For Polycystic ovary syndrome
Visit site: pcoschallenge.orgPeople Living with Aphasia Network (PLAN)
Peer-led network for people with aphasia and stroke survivors: support tools, advocacy resources, community calls.
For Stroke
Visit site: aphasiaplan.orgPKD Foundation
US charity for people affected by polycystic kidney disease, offering education, a Hope Line, peer mentors, local communities, advocacy and research funding.
For Polycystic kidney disease
Visit site: pkdcure.orgPositive Women's Network – USA
US national membership network of women and gender diverse people living with HIV, offering community, leadership training, policy advocacy and regional chapters.
For HIV
Visit site: pwn-usa.org
Prevent Blindness
US volunteer eye health and safety organization offering information and programs on glaucoma, macular degeneration, diabetic retinopathy and more.
For Glaucoma, Macular degeneration, Diabetic eye disease
Visit site: preventblindness.org
Prevent Cancer Foundation
US foundation that helps people stay ahead of cancer through prevention and early detection; member of the Global Lung Cancer Coalition.
For Lung cancer
Visit site: preventcancer.org
Project Purple
Nonprofit seeking a cure for pancreatic cancer and improving patients’ lives through research funding and patient assistance.
For Pancreatic cancer
Visit site: projectpurple.orgProject Sleep
US nonprofit raising awareness of sleep disorders, including insomnia, and running a free national Sleep Helpline with personalized support and resources.
For Insomnia, Obstructive sleep apnoea, Narcolepsy
Visit site: project-sleep.com
Prostate Cancer Foundation
Foundation funding prostate cancer research and providing free, trusted resources for patients.
For Prostate cancer
Visit site: pcf.org
Prostate Cancer Research Institute
Nonprofit helping men and caregivers research prostate cancer treatment options through education and a helpline.
For Prostate cancer
Visit site: pcri.org
Pulmonary Fibrosis Foundation
US nonprofit providing education, support groups, a patient help center and research funding for people with pulmonary fibrosis, including IPF.
For Idiopathic pulmonary fibrosis
Visit site: pulmonaryfibrosis.org
Pulmonary Hypertension Association
The world's largest pulmonary hypertension organization, providing support, education and resources to improve the lives of people with PH.
For Pulmonary arterial hypertension
Visit site: phassociation.orgRestless Legs Syndrome Foundation
Nonprofit in Austin, Texas offering people with restless legs syndrome volunteer-led local and virtual support groups, webinars and a magazine.
For Restless legs syndrome
Visit site: rls.orgRheumatoid Arthritis Foundation, Help Fight RA
US 501(c)(3) nonprofit dedicated to rheumatoid arthritis, offering information, education, awareness events and support to RA patients.
For Rheumatoid arthritis
Visit site: helpfightra.org
Sarcoma Alliance
Nonprofit offering guidance, education and support for everyone affected by sarcoma.
For Sarcoma
Visit site: sarcomaalliance.org
Sarcoma Foundation of America
Foundation enhancing the lives of sarcoma patients through research funding, education and advocacy.
For Sarcoma
Visit site: curesarcoma.org
Schizophrenia & Psychosis Action Alliance
US nonprofit advocating for people with schizophrenia and psychosis-related disorders and their families, promoting hope, recovery and better care.
For Schizophrenia
Visit site: sczaction.org
SHARE Cancer Support
Free support for breast, ovarian, uterine and cervical cancer: toll-free national support line, Zoom groups incl. metastatic lobular and brain-metastases groups, ovarian cancer section.
For Metastatic breast cancer, Ovarian cancer
Visit site: sharecancersupport.orgSickle Cell Disease Association of America
US national association of community-based member organizations serving people with sickle cell disease through advocacy, education and support.
For Sickle cell disease
Visit site: sicklecelldisease.orgSisters by Heart
Volunteer parent- and patient-led group for families affected by single ventricle heart disease, offering care packages, guides and the Linked By Heart network.
For Congenital heart disease
Visit site: sistersbyheart.org
Sjögren's Foundation
US nonprofit for people with Sjögren's disease: updates on research, treatments, events, advocacy and patient resources.
For Sjögren's disease
Visit site: sjogrens.org
Solve M.E.
Patient and caregiver resources, find-a-doctor guide, clinical trial list, unhide patient registry, research grants, advocacy for ME/CFS and long COVID.
For Long COVID and ME/CFS
Visit site: solvecfs.orgSpinal Cord Injury Association of Connecticut (SCIACT)
United Spinal chapter serving people in Connecticut with spinal cord injuries or disease and their families, with support groups, peer services, events and advocacy.
For Spinal cord injury
Visit site: sciact.orgSpondylitis Association of America
The leading US nonprofit educating, empowering and advocating for people with ankylosing spondylitis and related spondyloarthritis.
For Ankylosing spondylitis
Visit site: spondylitis.org
St. Baldrick's Foundation
Childhood cancer research charity known for head-shaving events, funding research for cures for children with cancer.
For Childhood cancers
Visit site: stbaldricks.orgStanding Up to POTS
Organisation for people with POTS offering patient information, teen and adult support groups, a podcast and advocacy.
For Postural tachycardia syndrome (POTS)
Visit site: standinguptopots.orgStop Scleroderma
Chicago-based foundation serving people with scleroderma and families through support groups, patient education conferences, resources and advocacy.
For Systemic sclerosis (scleroderma)
Visit site: stopscleroderma.orgStopAfib.org
US non-profit founded by an afib patient that provides atrial fibrillation information, patient conferences and awareness campaigns for patients and families.
For Atrial fibrillation
Visit site: stopafib.orgStroke Buddies
Survivor-built nonprofit offering stroke survivors and families online support groups, recovery guides, videos, a podcast and community connection.
For Stroke
Visit site: strokebuddies.orgStroke Onward
US charity helping stroke survivors and carepartners rebuild identity, offering an online community, regional gatherings, speakers and recovery resources.
For Stroke
Visit site: strokeonward.orgStudents With Psychosis
US 501(c)(3) nonprofit peer community supporting students and advocates living with psychosis through membership, events, resources and advocacy.
For Schizophrenia
Visit site: sws.ngoSupport for People with Oral and Head and Neck Cancer (SPOHNC)
US nonprofit for oral and head and neck cancer patients, survivors and caregivers, offering support chapters, peer mentoring, education and publications.
For Head and neck cancer
Visit site: spohnc.orgTeam Titin, Inc.
501(c)(3) nonprofit uniting families, clinicians and researchers around titin (TTN)-related muscle and heart conditions through connection, advocacy, care and research.
For Dilated cardiomyopathy
Visit site: titinmyopathy.comTED Community Organization
Patient-founded nonprofit for people with thyroid eye disease and Graves' disease, offering online support groups, one-on-one support, webinars and in-person meet-ups.
For Graves' disease and hyperthyroidism
Visit site: tedcommunity.orgThe Aneurysm and AVM Foundation (TAAF)
San Francisco nonprofit for people affected by brain aneurysm and AVM, offering support groups, a Brain Buddy programme, kids' programmes and research grants.
For Brain aneurysm
Visit site: taafonline.org
The Association for Frontotemporal Degeneration
US nonprofit for people facing frontotemporal degeneration (FTD): reliable information, HelpLine support, advocacy and research.
For Frontotemporal dementia
Visit site: theaftd.orgThe Association of Hidradenitis Suppurativa & Inflammatory Diseases (AHSID)
US patient advocacy nonprofit for people with hidradenitis suppurativa, offering education, community, advocacy and an annual patient summit.
For Hidradenitis suppurativa
Visit site: theahsid.orgThe Autism Community in Action (TACA)
US nonprofit serving families of individuals with autism with education, parent coaching, a support community, events and conferences.
For Autism
Visit site: tacanow.org
The Black Heart Association
Free community heart-health screenings, education, advocacy and connection to care.
For Coronary artery disease
Visit site: blackheartassociation.orgThe Coalition for Hemophilia B
National non-profit in New York serving the hemophilia B community with advocacy, events, newsletters, financial assistance, scholarships and education.
For Haemophilia
Visit site: hemob.orgThe Danny Did Foundation
Foundation for families affected by epilepsy and SUDEP, offering education, seizure device grants, travel assistance and bereavement support.
For Epilepsy
Visit site: dannydid.orgThe Diabetes Link (formerly College Diabetes Network)
Community for young adults with diabetes offering college chapters, meetups, an online Discord community, resources, scholarships and advocacy.
For Type 1 diabetes
Visit site: thediabeteslink.orgThe Endometriosis Coalition (The Endo Co)
Patient-founded group for people with endometriosis offering education, resources, advocacy, a support group and research fundraising.
For Endometriosis
Visit site: theendo.co
The Healing NET Foundation
Foundation providing neuroendocrine cancer and carcinoid disease information for patients and clinicians.
For Neuroendocrine tumours
Visit site: thehealingnet.orgThe HeartBrothers Foundation
Founded by heart failure and heart transplant survivors, it offers support groups, peer visits and housing for heart failure patients and families.
For Heart failure
Visit site: heartbrothers.orgThe Hemophilia Foundation of Maryland
Nonprofit serving Maryland people with hemophilia, vWD and other bleeding disorders through education, advocacy, support services and financial assistance.
For Haemophilia
Visit site: hfmonline.orgThe John Ritter Foundation for Aortic Health
Foundation offering peer support, nurse help preparing for appointments, caregiver support and webinars for people affected by thoracic aortic aneurysm and dissection.
For Aortic aneurysm
Visit site: johnritterfoundation.org
The Life Raft Group
Patient organization helping people with gastrointestinal stromal tumor (GIST) through education, empowerment and research.
For Sarcoma
Visit site: liferaftgroup.orgThe Lisa Foundation for Brain Aneurysms
US foundation for brain aneurysm awareness, education and survivor support, listing brain aneurysm support groups by state and a young adult network.
For Brain aneurysm
Visit site: lisafoundation.orgThe MG Alliance
US coalition of nonprofit myasthenia gravis organisations offering support groups, education, awareness, advocacy and events for patients and families.
For Myasthenia gravis
Visit site: themgalliance.org
The Michael J. Fox Foundation for Parkinson's Research
The world's largest nonprofit funder of Parkinson's research; also offers patient information, research participation and community resources.
For Parkinson disease
Visit site: michaeljfox.org
The National Children's Cancer Society (NCCS)
Financial help with medical costs, travel (gas, flights) and lodging for treatment, survivorship resources and scholarships.
For Childhood cancers
Visit site: thenccs.orgThe Niekro Aneurysm and AVM Foundation
Houston-based foundation for brain aneurysm, AVM and hemorrhagic stroke patients and caregivers, with a support group locator, virtual groups and education.
For Brain aneurysm
Visit site: niekrofoundation.org
The Oral Cancer Foundation
Foundation helping people who face oral and oropharyngeal cancer with vetted information and patient support.
For Head and neck cancer
Visit site: oralcancerfoundation.orgThe ROS1ders
Global group of patients and caregivers living with ROS1-positive cancer, bridging patients to research.
For Lung cancer
Visit site: theros1ders.orgThe Seena Magowitz Foundation
Serves people affected by pancreatic cancer with virtual support groups, second opinions, educational resources, clinical trial info and bereavement support.
For Pancreatic cancer
Visit site: seenamagowitzfoundation.org
The Skin Cancer Foundation
Foundation providing medically reviewed skin cancer information on prevention, early detection and treatment.
For Melanoma
Visit site: skincancer.orgThe Stroke Foundation
Supports stroke survivors and caregivers with free therapy, financial help, resources and survivor stories.
For Stroke
Visit site: thestrokefoundation.org
The Well Project
US nonprofit providing information, community and advocacy for women and girls living with HIV.
For HIV
Visit site: thewellproject.org
ThyCa: Thyroid Cancer Survivors' Association
Survivor association helping people through their thyroid cancer journey with information and support.
For Thyroid cancer
Visit site: thyca.org
Tigerlily Foundation
National women’s health and oncology organization providing breast cancer education, awareness, advocacy and support.
For Metastatic breast cancer, Triple-negative breast cancer
Visit site: tigerlilyfoundation.orgTN Warrior Racing Inc
US nonprofit for people with trigeminal neuralgia and facial pain offering awareness campaigns, events and a monthly online support group.
For Trigeminal neuralgia
Visit site: tnwarriorracing.comTourette Association of America
US national non-profit serving people with Tourette and tic disorders through a network of chapters, support groups, awareness work and research.
For Tourette syndrome
Visit site: tourette.org
Treatment Action Group
Independent, activist, community-based research and policy think tank fighting for better treatment, prevention and cures for HIV and tuberculosis.
For HIV, Tuberculosis
Visit site: treatmentactiongroup.orgTremor Support CT
Statewide Connecticut support group for people with essential tremor and their families, holding meetings every two months with expert speakers.
For Essential tremor
Visit site: tremorsupportct.orgTri-State Brain Aneurysm Support Group, Inc.
Regional nonprofit for brain aneurysm survivors and families in Kentucky, Ohio and Indiana, with monthly meetings, social events and an annual symposium.
For Brain aneurysm
Visit site: tsbasg.org
Triage Cancer
National nonprofit providing free education on legal and practical issues (insurance, employment, finances) for people with cancer and caregivers.
For Lung cancer, Pancreatic cancer, Metastatic breast cancer and 30 more
Visit site: triagecancer.org
Triple Negative Breast Cancer Foundation
Foundation providing triple negative breast cancer information, resources and a caring community, with a TNBC helpline run with CancerCare.
For Triple-negative breast cancer
Visit site: tnbcfoundation.orgTurner Syndrome Foundation
Non-profit Turner syndrome advocacy agency offering educational resources, personal support, outreach programmes, webinars and a patient registry.
For Turner syndrome
Visit site: turnersyndromefoundation.orgTurner Syndrome Society of the United States
National society for people with Turner syndrome and families, offering health information, support groups, a national conference and a research registry.
For Turner syndrome
Visit site: turnersyndrome.orgUnited Cerebral Palsy
National affiliate network for people with cerebral palsy and other disabilities offering referral, advocacy, resources and local services.
For Cerebral palsy
Visit site: ucp.orgUnited Spinal Association
National membership organisation for people with spinal cord injuries and disorders and wheelchair users, offering peer support, chapters, a resource center and advocacy.
For Spinal cord injury
Visit site: unitedspinal.orgUnited States Adult Cystic Fibrosis Association, Inc. (USACFA)
US non-profit run by adults with CF that publishes CF Roundtable magazine and offers support, information, scholarships and outreach to the CF community.
For Cystic fibrosis
Visit site: cfroundtable.comUnited States People Living with HIV Caucus (HIV Caucus)
US coalition of PLHIV-led networks offering advocacy, leadership development, technical assistance and community resources for people living with HIV.
For HIV
Visit site: hivcaucus.orgAlzheimer's Drug Discovery Foundation
Funds the early work on new Alzheimer's medicines, in universities and companies.
For Alzheimer disease
Visit site: alzdiscovery.orgAnswer ALS
Joins patients and researchers in a big shared ALS research project and shares its data openly.
For ALS (motor neurone disease)
Visit site: answerals.orgBrain Aneurysm Foundation
Funds research into preventing ruptures and better diagnosis, and raises awareness of the warning signs.
For Brain aneurysm
Visit site: bafound.orgCeliac Disease Foundation
Supports coeliac research, runs the iCureCeliac patient registry, and offers education and advocacy.
For Coeliac disease
Visit site: celiac.orgCerebral Palsy Alliance
Funds cerebral palsy research and works on therapy, advocacy and assistive technology.
For Cerebral palsy
Visit site: cerebralpalsy.org.auChordoma Foundation
Free patient navigation, peer support and research funding for chordoma, a rare bone cancer.
For Sarcoma
Visit site: chordomafoundation.orgChristopher & Dana Reeve Foundation
Funds research to cure spinal cord injury and helps people and families living with paralysis.
For Spinal cord injury
Visit site: christopherreeve.orgCLL Global Research Foundation
Funds CLL research around the world and shares research news and patient education videos.
For Chronic lymphocytic leukaemia
Visit site: cllglobal.orgCure Parkinson's
Funds research into treatments that could slow, stop or reverse Parkinson's.
For Parkinson disease
Visit site: cureparkinsons.org.ukDementia Alliance International (DAI)
Organisation for people with a dementia diagnosis: free online peer support groups, webinars, Brain Health Hub, resources for care partners.
For Alzheimer disease, Vascular dementia
Visit site: dementiaallianceinternational.orgDKMS
Finds blood stem cell donors worldwide so that people with blood cancer can have a transplant.
For Acute lymphoblastic leukaemia, Acute myeloid leukaemia, Chronic myeloid leukaemia and 1 more
Visit site: dkms.orgDown Syndrome Education International
Researches how children with Down syndrome learn and shares teaching resources for families everywhere.
For Down syndrome
Visit site: down-syndrome.orgDysautonomia International
Volunteer-run group that funds POTS research, teaches doctors about autonomic disorders and connects patients.
For Postural tachycardia syndrome (POTS)
Visit site: dysautonomiainternational.orgDystonia Europe
Connects people with dystonia, member groups and doctors across Europe, and raises awareness.
For Dystonia
Visit site: dystonia-europe.orgDystonia Medical Research Foundation
Funds dystonia research and offers support groups, webinars and a resource library.
For Dystonia
Visit site: dystonia-foundation.orgEB Research Partnership
Funds research into treatments and a cure for EB, putting money back into new projects when they succeed.
For Epidermolysis bullosa
Visit site: ebresearch.orgElton John AIDS Foundation
Funds HIV projects for groups most at risk, such as LGBTQ+ people, young people and people who use drugs.
For HIV
Visit site: eltonjohnaidsfoundation.orgEOS Network
Patient-led charity with information and support for people with eosinophilic diseases, and a platform for doctors.
For Eosinophilic oesophagitis
Visit site: eosnetwork.orgEuropean Forum for Research and Education in Allergy and Airway Diseases (EUFOREA)
Runs patient guides, a patient advisory board and a global awareness day for nasal polyps and airway diseases.
For Chronic rhinosinusitis with nasal polyps
Visit site: euforea.org
Follicular Lymphoma Foundation
UK-based foundation dedicated to follicular lymphoma research, treatment advances and patient information. Member of Lymphoma Coalition.
For Follicular lymphoma
Visit site: theflf.orgFoundation for Burkitt Lymphoma Research
Foundation set up by parents that backs Burkitt lymphoma research, including a genome project with the US NCI.
For Burkitt lymphoma
Visit site: foundationforburkittlymphoma.orgFoundation for Peripheral Neuropathy
Funds research into peripheral neuropathy with partner centres worldwide, and runs education and awareness work.
For Diabetic neuropathy
Visit site: foundationforpn.orgGlobal Coalition for Adaptive Research
Non-profit that runs GBM AGILE, a large glioblastoma trial testing several new medicines.
For Glioblastoma
Visit site: gcaresearch.orgGlobal Keratoconus Foundation
Patient-led network that shares keratoconus information and supports research, education and advocacy.
For Keratoconus
Visit site: kcglobal.orgGlobal Tuberculosis Community Advisory Board
Community activists who make sure TB research meets the needs of people affected by TB.
For Tuberculosis
Visit site: globaltbcab.orgGlobal Vitiligo Foundation
Supports people with vitiligo through education, research, support groups and World Vitiligo Day.
For Vitiligo
Visit site: globalvitiligofoundation.orgGraves' Disease and Thyroid Foundation
Education and support for people with Graves' disease and thyroid eye disease, with online support groups.
For Graves' disease and hyperthyroidism
Visit site: gdatf.orgHereditary Neuropathy Foundation
Supports people with CMT and runs a patient-led CMT registry to help research.
For Charcot-Marie-Tooth disease
Visit site: curecmt.orgHidradenitis Suppurativa Foundation (HS Foundation)
Funds HS research and runs education for patients and doctors, including a yearly symposium.
For Hidradenitis suppurativa
Visit site: hs-foundation.orgHistiocytosis Association
Supports patients and families with histiocytic disorders, including HLH, funds research and lists expert doctors.
For Haemophagocytic lymphohistiocytosis
Visit site: histio.orgHope for Depression Research Foundation
Funds brain research into the causes and treatment of depression, and fights stigma.
For Depression
Visit site: hopefordepression.orgHuntington's Disease Youth Organization
Information and support for children, teens and young adults in families with Huntington's.
For Huntington's disease
Visit site: hdyo.org
International Myeloma Foundation (IMF)
Global myeloma charity: InfoLine (US/Canada toll-free and worldwide number, bookable calls), support group directory, Spanish-language groups, foreign-language resources incl. Hungarian and Polish pages.
For Multiple myeloma
Visit site: myeloma.orgInternational Osteoarthritis Foundation (OAFI)
Works for people with osteoarthritis through research, a solidarity clinic, education and awareness campaigns.
For Osteoarthritis
Visit site: oafifoundation.comJeffrey Modell Foundation
Helps people with primary immunodeficiency find expert doctors, funds research and offers free genetic sequencing.
For Haemophagocytic lymphohistiocytosis
Visit site: info4pi.orgLife for a Child
Gives insulin, diabetes supplies and education to children and young people with diabetes.
For Type 1 diabetes
Visit site: lifeforachild.orgLifting The Burden
Leads the Global Campaign against Headache, which works with the World Health Organization.
For Migraine
Visit site: l-t-b.orgMovember
A men's health charity whose funding includes work on prostate cancer.
For Prostate cancer, Testicular cancer
Visit site: movember.comMyocarditis Foundation
Raises awareness of myocarditis, offers patient information and an online community, and funds research.
For Myocarditis
Visit site: myocarditisfoundation.orgMyotonic Dystrophy Foundation
Supports and connects people with myotonic dystrophy, shares care resources and funds research toward a cure.
For Myotonic dystrophy
Visit site: myotonic.orgNational Alopecia Areata Foundation (NAAF)
Funds research into a cure and treatments, and offers phone support, support groups and youth mentoring.
For Alopecia areata
Visit site: naaf.orgNational Blood Clot Alliance
Gives people with blood clots patient guides, peer support and webinars, and campaigns for better prevention and care.
For Deep vein thrombosis and pulmonary embolism
Visit site: stoptheclot.orgOcular Immunology and Uveitis Foundation
Funds research into eye inflammation, trains eye doctors, and gives patients information and peer support.
For Uveitis
Visit site: uveitis.orgPatient-Led Research Collaborative
People with long COVID who fund and shape research and link patients to studies.
For Long COVID and ME/CFS
Visit site: patientresearchcovid19.comPD Avengers
A Parkinson's community that campaigns and leads the global Spark the Night awareness event.
For Parkinson disease
Visit site: pdavengers.comPituitary Network Association
Non-profit for people with pituitary tumours and disorders, their families and doctors.
For Cushing's syndrome, Pituitary tumours
Visit site: pituitary.orgPlatelet Disorder Support Association
Patient-founded group giving education, support, advocacy and research for people with ITP and their families.
For Immune thrombocytopenia (ITP)
Visit site: pdsa.orgPOLG Foundation
Funds and connects research toward treatments and a cure for POLG mitochondrial disorders.
For Mitochondrial disease
Visit site: polgfoundation.orgSamter's Society
Patient-run group for AERD (asthma, nasal polyps, aspirin reactions): handouts, doctor map, online support group.
For Chronic rhinosinusitis with nasal polyps
Visit site: samterssociety.orgSave One Life
Gives direct help, such as sponsorships, scholarships and grants, to people with bleeding disorders in poorer countries.
For Haemophilia
Visit site: saveonelife.netShift.ms
An online community where people with MS support each other, with films about life with MS.
For Multiple sclerosis
Visit site: shift.msShir for Life
Funds neuroblastoma research worldwide, raises awareness and runs a global webinar series for families.
For Neuroblastoma
Visit site: shirforlife.comTarget ALS
Funds and runs ALS research to speed up new treatments, including a large worldwide study.
For ALS (motor neurone disease)
Visit site: targetals.orgTesticular Cancer Foundation
Free guides on self-checks, treatment and life after it, plus online survivor groups and a yearly summit.
For Testicular cancer
Visit site: testicularcancer.orgThe Bee Foundation
Funds brain aneurysm research, teaches the signs and runs support groups and community events.
For Brain aneurysm
Visit site: thebeefoundation.orgThe Bluefield Project to Cure FTD
Funds research and works with drug companies to find treatments for inherited (progranulin) FTD.
For Frontotemporal dementia
Visit site: bluefieldproject.orgThe Brain Tumour Charity
Funds brain tumour research and runs a support line, groups and counselling, from the UK.
For Glioblastoma
Visit site: thebraintumourcharity.orgThe Fibroid Foundation
Patient-founded group that teaches about fibroids, runs local chapters and pushes for fibroid research.
For Uterine fibroids
Visit site: fibroidfoundation.orgThe Marfan Foundation
Drives research, education and support for people with Marfan and related genetic aortic and vascular conditions.
For Aortic aneurysm
Visit site: marfan.orgThe Max Foundation
Brings cancer medicines, support groups and patient help to people in over 80 countries.
For Chronic myeloid leukaemia
Visit site: themaxfoundation.orgThe MOG Project
Supports people with MOGAD, an immune condition that often causes optic neuritis, and funds research.
For Optic neuritis
Visit site: mogproject.orgThe Myositis Association
Offers information, support groups, advocacy and an annual conference, and funds myositis research.
For Dermatomyositis and polymyositis (myositis)
Visit site: myositis.orgTurner Syndrome Global Alliance
Links people with Turner syndrome to specialist clinics, a patient registry, research and community support.
For Turner syndrome
Visit site: tsgalliance.orgUnited Mitochondrial Disease Foundation
Funds mito research and runs support, education and a patient registry for people with mito and their families.
For Mitochondrial disease
Visit site: umdf.orgVR Foundation (Vitiligo Research Foundation)
Funds vitiligo research worldwide, from the lab to clinical trials, and shares information for patients.
For Vitiligo
Visit site: vrfoundation.orgWilson Disease Association
Gives information and support to people with Wilson disease, runs a patient registry and lists clinical trials.
For Wilson disease
Visit site: wilsondisease.orgWorld Anemia Awareness
Global campaign that shares easy-to-read information on anaemia and iron deficiency and runs World Anemia Awareness Day.
For Iron deficiency anaemia
Visit site: worldanemiaawareness.comWorld Diabetes Foundation
Funds projects that improve diabetes prevention and care in low- and middle-income countries.
For Type 2 diabetes, Diabetic foot ulcer, Diabetic neuropathy and 1 more
Visit site: worlddiabetesfoundation.orgWorld Endometriosis Research Foundation (WERF)
A charity that funds and links endometriosis research around the world.
For Endometriosis
Visit site: endometriosisfoundation.orgWorld Scleroderma Foundation
Supports scleroderma research in all regions of the world and aims to improve life for patients and families.
For Systemic sclerosis (scleroderma)
Visit site: worldsclerofound.orgWorldwide EndoMarch
A yearly awareness march in many countries, calling for faster diagnosis and better care.
For Endometriosis
Visit site: endomarch.org
988 Suicide & Crisis Lifeline
US national 24/7 free and confidential lifeline for anyone in suicidal crisis or emotional distress, reachable by calling or texting 988 or by chat.
For any disease
Visit site: 988lifeline.org
MedlinePlus
Free, easy-to-read health information service of the US National Library of Medicine (NIH) on diseases, conditions, drugs and wellness.
For any disease
Visit site: medlineplus.govABC Global Alliance (Advanced Breast Cancer)
Global advanced breast cancer platform: peer navigation programme, Honestly Spoken storytelling, webinars, member list.
For Metastatic breast cancer
Visit site: abcglobalalliance.org
Acute Leukemia Advocates Network (ALAN)
Global network of 69 acute leukaemia patient organisations (hosted by the Swiss Leukemia Patient Advocates Foundation); member list helps patients find a national group.
For Acute myeloid leukaemia, Acute lymphoblastic leukaemia
Visit site: acuteleuk.org
AGORA - Platform of organisations of people with rheumatic and musculoskeletal diseases from Southern Europe
Regional umbrella of RMD patient organisations in Southern Europe; helps build user-led patient groups and gives them a voice nationally and in Europe.
For Rheumatoid arthritis
Visit site: agora-platform.eu
AIDS Action Europe
Membership network of civil society organisations in Europe and Central Asia; advocacy on medicines access, stigma, testing, harm reduction, HIV criminalisation; Clearinghouse of resources.
For HIV
Visit site: aidsactioneurope.orgAlliance for Pulmonary Hypertension
PH patient groups from several countries sharing knowledge: a library of resources, news and webinars.
For Pulmonary arterial hypertension
Visit site: ph-ksp.com
Alzheimer Europe
Umbrella of national Alzheimer associations in 39 countries, with a member directory.
For Alzheimer disease, Frontotemporal dementia, Lewy body dementia and 2 more
Visit site: alzheimer-europe.org
Alzheimer's Disease International (ADI)
Global federation of dementia associations in 100+ countries: member associations list, find local support, dementia information, World Alzheimer Report.
For Alzheimer disease, Frontotemporal dementia, Vascular dementia
Visit site: alzint.org
Amyloidosis Alliance
Global alliance of amyloidosis patient groups: advocacy, awareness and earlier diagnosis, access to care, patient involvement in research, World Amyloidosis Day, resource library and toolkit.
For Amyloidosis
Visit site: amyloidosisalliance.orgAssociation of European Coeliac Societies (AOECS)
Unites coeliac societies in Europe and beyond, and runs the Crossed Grain gluten-free symbol.
For Coeliac disease
Visit site: aoecs.org
Autism-Europe
European association of autism organisations advancing the rights of autistic people and families: EU advocacy based on the UN CRPD, congresses, awareness campaigns, map of members and services.
For Autism
Visit site: autismeurope.org
Axial Spondyloarthritis International Federation
Worldwide federation of axial spondyloarthritis (incl. ankylosing spondylitis) patient associations; World AS Day, IMAS/IMAP patient surveys, delay-to-diagnosis campaigns, patient resources.
For Ankylosing spondylitis
Visit site: asif.info
Breakthrough T1D (formerly JDRF)
Type 1 diabetes research and advocacy charity: T1D resource library, newly-diagnosed guidance, community, clinical trial information; national affiliates in several countries.
For Type 1 diabetes
Visit site: breakthrought1d.org
Childhood Cancer International (CCI)
Global network of parent and survivor organisations: member directory to find a national group, survivor network and knowledge portal.
For Childhood cancers, Acute lymphoblastic leukaemia, Neuroblastoma and 1 more
Visit site: childhoodcancerinternational.org
Childhood Cancer International Europe (CCI Europe)
Network of parent and survivor organisations in 38 countries, with a map to find your national group.
For Childhood cancers, Acute lymphoblastic leukaemia, Neuroblastoma
Visit site: ccieurope.eu
CLL Advocates Network
Global network of CLL patient groups: advocacy toolkit, clinical trials hub, resource hub, workshops and webinars; helps build CLL support in every country (individual support stays with national groups).
For Chronic lymphocytic leukaemia
Visit site: clladvocates.net
CML Advocates Network
Patient- and carer-led global network of CML patient groups: advocacy education, World CML Day, 'Know Your CML' app, CML Horizons conference, sharing of best practice.
For Chronic myeloid leukaemia
Visit site: cmladvocates.netCystic Fibrosis Europe
Federation of national CF patient organisations: patient perspective in standards of care, member training and information, patient-driven research (PORG), EU advocacy.
For Cystic fibrosis
Visit site: cf-europe.euDEBRA International
Links national EB patient groups worldwide and shares EB patient guides, care guidelines and an EB card.
For Epidermolysis bullosa
Visit site: debra-international.org
Digestive Cancers Europe (DiCE)
European umbrella of patient groups for digestive cancers, with a list of its members.
For Colorectal cancer, Liver and biliary tract cancer, Gastric and oesophageal cancer and 2 more
Visit site: digestivecancers.euDown Syndrome International
Global network of people with Down syndrome and their families, helping them speak up for their rights.
For Down syndrome
Visit site: ds-int.org
ENGAGe - European Network of Gynaecological Cancer Advocacy Groups (ESGO)
ESGO network of 80+ gynaecological cancer patient groups; member list with country filter.
For Ovarian cancer, Cervical cancer, Endometrial cancer
Visit site: esgo.org
ERN PaedCan – ERN for paediatric oncology
European network of paediatric cancer centres with virtual tumour boards and a section for patients and families.
For Childhood cancers, Glioblastoma
Visit site: ern-net.eu
EULAR PARE (EULAR network of organisations of People with Arthritis/Rheumatism in Europe)
Network of national patient organisations for people with rheumatic and musculoskeletal diseases (RMDs); EU-level advocacy, patient research partner training, Young PARE, webinars and support for national groups.
For Rheumatoid arthritis, Lupus (SLE), Psoriatic arthritis and 9 more
Visit site: eular.orgEURACAN – ERN for rare adult solid cancers
European network of expert centres for rare adult cancers, including brain tumours; your doctor can bring your case to it.
For Glioblastoma, Liver and biliary tract cancer, Gastric and oesophageal cancer and 1 more
Visit site: euracan.eu
Euro-Ataxia
European federation of national ataxia associations (incl. Friedreich ataxia): shares information on care and research progress.
For Friedreich ataxia
Visit site: euroataxia.orgEUROPA DONNA - The European Breast Cancer Coalition
Coalition of national breast cancer forums in 47 countries; member-country list (no website listed for HU, DE, AT, UK). MBC advocacy priority.
For Metastatic breast cancer, Triple-negative breast cancer
Visit site: europadonna.org
Europa Uomo - The European Prostate Cancer Coalition
Patient-led European coalition of national prostate cancer groups: information on screening, treatment decisions and quality of life, AI chatbot, advocacy
For Prostate cancer
Visit site: europa-uomo.org
European AIDS Treatment Group
Patient-led network of HIV activists in the WHO Europe region; treatment and quality-of-life advocacy, prevention, research involvement (Partners in Science), EATG Training Academy.
For HIV
Visit site: eatg.orgEuropean Alliance for Restless Legs Syndrome
Alliance of national RLS patient groups across Europe that raises awareness and speaks up at European level.
For Restless legs syndrome
Visit site: earls.eu
European Alliance of Neuromuscular Disorders Associations
European federation of national neuromuscular patient associations (all neuromuscular conditions): advocacy, international conferences, webinars, youth camps, patient publications.
For Myasthenia gravis, Spinal muscular atrophy, Duchenne muscular dystrophy and 1 more
Visit site: eamda.eu
European Blind Union
European umbrella of national organisations of blind and partially sighted people; advocacy on accessibility, Marrakesh Treaty, braille, mobility; news, webinars, podcasts.
For Retinitis pigmentosa, Macular degeneration, Glaucoma
Visit site: euroblind.orgEuropean Cancer Patient Coalition (ECPC)
Umbrella of European cancer patient groups, with a patient toolbox and a legal network for cancer patients.
For Glioblastoma, Lung cancer, Childhood cancers and 30 more
Visit site: ecpc.orgEuropean CMT Federation
Unites CMT patient groups across Europe, funds research and runs a yearly CMT awareness campaign.
For Charcot-Marie-Tooth disease
Visit site: ecmtf.org
European Coalition for People living with Obesity
Patient-led European coalition of national obesity patient groups: campaigns (People First language, #LivingWithObesity), patient lounge, podcasts, family resources, advocacy.
For Obesity
Visit site: eurobesity.orgEuropean Congenital Heart Disease Organisation (ECHDO)
European network of parent and adult patient groups for congenital heart disease; pushes for European care standards.
For Congenital heart disease
Visit site: echdo.euEuropean Depression Association
Runs European Depression Day (October) with national partners; publishes a handbook on depression in 14 languages.
For Depression
Visit site: europeandepressionday.euEuropean Down Syndrome Association (EDSA)
Supports and represents people with Down syndrome across Europe, with webinars, courses and EU advocacy.
For Down syndrome
Visit site: edsa.euEuropean Federation of Allergy and Airways Diseases Patients' Associations
Federation of national allergy, asthma and COPD patient associations: AboutAsthma.org patient guide, patient academy, expert patient network, EU advocacy.
For Asthma, COPD, Atopic dermatitis (eczema)
Visit site: efanet.orgEuropean Federation of Associations of Families of People with Mental Illness
European federation of family/carer associations: carer guidance (e.g. Schizophrenia Carer Playbook), advocacy training for relatives, family research, EU policy work.
For Schizophrenia, Bipolar disorder
Visit site: eufami.orgEuropean Federation of Hard of Hearing People
Protects and promotes the rights of people with hearing loss in Europe; runs projects and Hearing Access Week.
For Hearing loss
Visit site: efhoh.orgEuropean Federation of Neurological Associations (EFNA)
Umbrella of 21 pan-European neurology patient groups; map of European neurology patient organisations.
For Alzheimer disease, Parkinson disease, Multiple sclerosis and 1 more
Visit site: efna.netEuropean Glaucoma Society - Experts by Experience (EbE) patient group
Patient group under the European Glaucoma Society umbrella giving patients a voice with doctors; lists national glaucoma patient support groups in Europe. Professional body (patient group within it).
For Glaucoma
Visit site: eugs.org
European Haemophilia Consortium
European umbrella of national haemophilia and rare bleeding disorder patient groups: EU policy advocacy, awareness campaigns, community events, EHC Academy, grants and youth fellowship.
For Haemophilia
Visit site: ehc.eu
European Heart Network
Alliance of national heart foundations and associations (some representing patients); EU-level prevention policy and patient interest advocacy. Mixed, not purely patient-led.
For Heart failure, Coronary artery disease, High blood pressure and 2 more
Visit site: ehnheart.org
European Huntington Association
Umbrella of national Huntington's disease associations: links HD families across Europe, awareness, information, research support.
For Huntington's disease
Visit site: eurohuntington.org
European Kidney Patients' Federation
Federation of national kidney patient organisations: information materials, webinars, annual summit, youth camp, EU advocacy.
For Chronic kidney disease, IgA nephropathy, Polycystic kidney disease and 1 more
Visit site: ekpf.euEuropean Liver Patients' Association (ELPA)
European umbrella of national liver patient groups: liver disease information, HCC patient guide (with ESMO), clinical trial finder and liver cancer advocacy; points patients to member groups.
For Liver and biliary tract cancer, Fatty liver disease (MASLD/MASH), Primary biliary cholangitis and 4 more
Visit site: elpa.eu
European ME Alliance (EMEA)
Grouping of national ME organisations in about 20 countries: ME guidelines, fact sheets, country member pages; leads patient involvement in the EU DISCOVER-ME project.
For Long COVID and ME/CFS
Visit site: euro-me.org
European ME Coalition
Patient- and carer-led European ME/CFS advocacy for biomedical research funding (EU Parliament petition and resolution).
For Long COVID and ME/CFS
Visit site: europeanmecoalition.com
European Migraine & Headache Alliance
Patient umbrella of European headache organisations: Migraine Friendly Workplaces, map of headache clinics, MAPGRAINE access map, awareness campaigns, EU advocacy.
For Migraine
Visit site: emhalliance.orgEuropean Multiple Sclerosis Platform (EMSP)
Umbrella of national MS societies in 37 countries, with a member directory.
For Multiple sclerosis
Visit site: emsp.org
European Myasthenia Gravis Association
Non-profit umbrella of European national MG associations: information, support, awareness (European MG Day), journal and events.
For Myasthenia gravis
Visit site: eumga.euEuropean Narcolepsy Alliance for Patients (eNAP)
European alliance of narcolepsy patient groups that raises awareness and pushes for equal access to care.
For Narcolepsy
Visit site: narcolepsy.euEuropean Network of Fibromyalgia Associations (ENFA)
Europe-wide network of fibromyalgia patient groups that raises awareness and speaks up at EU level.
For Fibromyalgia
Visit site: enfa-europe.eu
European Organization for Professionals and Patients with ALS
European umbrella of ALS associations: stands up for the rights of European people with ALS, pushes for equal access to trials and medicines, shares research news.
For ALS (motor neurone disease)
Visit site: als.eu
European Patient Organisation for Dysimmune and Inflammatory Neuropathies
European voice for people with CIDP, MMN, GBS and related neuropathies: works with ERNs and medical societies, helps countries set up patient groups, runs DIN Day (11 June).
For CIDP (chronic inflammatory demyelinating polyneuropathy)
Visit site: epodin.orgEuropean Pulmonary Fibrosis Federation
Umbrella of European pulmonary fibrosis patient organisations: PF/IPF information, consultation guides, monthly webinars, clinical trial finder, European IPF Patient Charter, patient summit.
For Idiopathic pulmonary fibrosis
Visit site: eu-pff.org
European Reference Networks (European Commission)
The European Commission's 24 expert networks for rare and complex diseases; your doctor can contact them.
For Glioblastoma, Childhood cancers, Acute myeloid leukaemia and 1 more
Visit site: europa.euEuropean Sickle Cell Federation
European umbrella of sickle cell patient groups: training and capacity building, annual summit, awareness campaigns ('Sickle Cell Has No Colour'), newborn screening and registry work.
For Sickle cell disease
Visit site: escfederation.euEuropean Spinal Cord Injury Federation
European federation for people with spinal cord injury: holds congresses, runs projects and does political advocacy.
For Spinal cord injury
Visit site: escif.orgEUROPSO – European Umbrella Organisation for Psoriasis Movements
Federation of psoriasis patient groups in Europe, speaking up for fair treatment and information.
For Psoriasis
Visit site: euro-pso.org
EURORDIS – Rare Diseases Europe
Alliance of over 1,000 rare disease patient organisations, with a list of rare disease helplines by country.
For Glioblastoma, Acute myeloid leukaemia, Childhood cancers and 35 more
Visit site: eurordis.org
Fabry International Network
Global network of Fabry patient groups: resources guide, young adults community, humanitarian treatment programmes, webinars, help finding a national patient group.
For Fabry disease
Visit site: fabrynetwork.org
Federation of European Scleroderma Associations
Umbrella of European scleroderma patient support and advocacy organisations; World Scleroderma Day (29 June), European patient survey, Patient World Congress, educational videos; refers individuals to national groups.
For Systemic sclerosis (scleroderma)
Visit site: fesca-scleroderma.euFertility Europe
Brings together 36 patient groups from 30 countries and campaigns for fair access to fertility care in Europe.
For Female infertility
Visit site: fertilityeurope.eu
FH Europe Foundation
European network of FH and inherited lipid patient groups (FH, HoFH, Lp(a), FCS): patient information, lifestyle and treatment guidance, awareness and advocacy for early diagnosis.
For Familial hypercholesterolaemia
Visit site: fheurope.org
Friedreich's Ataxia Research Alliance
FA patient organisation (US-based, international research reach): FA information, newly-diagnosed guide, clinical trial finder, community events, research funding.
For Friedreich ataxia
Visit site: curefa.orgFrontline AIDS
A partnership of community groups that work together to shape HIV policy, funding and care.
For HIV
Visit site: frontlineaids.org
GAMIAN-Europe
Patient-driven pan-European mental health federation: patient advocacy and rights, anti-stigma campaigns, peer support resources, MEP Alliance for Mental Health.
For Depression, Schizophrenia, Bipolar disorder
Visit site: gamian.eu
GBS|CIDP Foundation International
Global patient organisation for GBS, CIDP and variants: health navigator, education, online forum, local chapters, patient registry, research grants.
For CIDP (chronic inflammatory demyelinating polyneuropathy)
Visit site: gbs-cidp.orgGI Cancers Alliance
Global alliance of 120+ GI cancer advocacy groups; education on biomarker testing and overviews of gastric, oesophageal, liver and bile duct cancers.
For Gastric and oesophageal cancer, Liver and biliary tract cancer, Pancreatic cancer and 1 more
Visit site: gicancersalliance.orgGlobal Allergy & Airways Patient Platform
Global platform of allergy, asthma, COPD and atopic disease patient organisations: disease information, GAAPP Academy, medication guides, campaigns.
For Asthma, COPD
Visit site: gaapp.orgGlobal Alliance for Rheumatic and Congenital Hearts (Global ARCH)
Global alliance of patient and family groups for congenital and rheumatic heart disease; offers training and advocacy.
For Congenital heart disease
Visit site: global-arch.org
Global Coalition of TB Advocates
Global platform of TB-affected communities and advocates; community-led monitoring, advocacy for better DR-TB regimens, anti-stigma tools, youth campaign.
For Tuberculosis
Visit site: gctacommunity.orgGlobal Colon Cancer Association
Global network of colorectal cancer patient organisations: patient education, Know Your Biomarker, ostomy programme, advocacy mentorship
For Colorectal cancer
Visit site: globalcca.org
Global Heart Hub
Global umbrella of heart patient organisations; runs a Heart Failure Patient Network, awareness campaigns, advocacy and patient resources.
For Heart failure, Coronary artery disease, Hypertrophic cardiomyopathy and 5 more
Visit site: globalhearthub.org
Global Liver Institute (GLI)
Global liver health advocacy body with a Liver Cancers Council, patient/caregiver education events and advocate training; not a direct support service.
For Liver and biliary tract cancer, Fatty liver disease (MASLD/MASH), Primary biliary cholangitis and 2 more
Visit site: globalliver.org
Global Lung Cancer Coalition (GLCC)
Coalition of 44 lung cancer patient organisations in 32 countries: factsheets, surveys, screening and research resources.
For Lung cancer
Visit site: lungcancercoalition.orgGlobal Myeloma Action Network (International Myeloma Foundation)
IMF-run global coalition of myeloma patient groups: annual summit, international bill of rights for myeloma patients, educational grants, resources in other languages, access advocacy.
For Multiple myeloma
Visit site: myeloma.org
Global Network of People Living with HIV
Global network run by people living with HIV; advocacy for access to prevention, treatment, care and support; community-led research and movement building with national and regional networks.
For HIV
Visit site: gnpplus.netGlobal Obesity Patient Alliance
Global coalition of obesity patient organisations giving people living with obesity a unified voice in advocacy.
For Obesity
Visit site: gopa.orgGlobal Patient Initiative to Improve Eczema Care
Eczema patient groups from many countries working together to improve eczema care worldwide.
For Atopic dermatitis (eczema)
Visit site: improveeczemacare.com
Global RA Network
International network of rheumatoid arthritis patient organisations and leaders; shares RA information, models-of-care and advocacy resources.
For Rheumatoid arthritis
Visit site: globalranetwork.orgHepatitis B Foundation
US-based nonprofit working worldwide for people with hepatitis B and D; patient information in 16+ languages, online support groups, physician directory, clinical trials info, international programmes. Not a federation.
For Hepatitis B
Visit site: hepb.org
Hypertrophic Cardiomyopathy Association International
International division of the US HCM Association: translated HCM information, country-specific resources, help finding expert care, and partnerships with HCM groups in other countries.
For Hypertrophic cardiomyopathy
Visit site: 4hcm.orgIDF Europe
European region of IDF: advocacy, EU research projects, youth leadership programmes and resources for people with diabetes.
For Type 1 diabetes, Type 2 diabetes, Diabetic eye disease
Visit site: idf.org
IgA Nephropathy Foundation
Patient-run IgAN non-profit (US-based, 'Go Global Network'): education, provider finder, patient registry, app, patient aid, research and clinical trial information.
For IgA nephropathy
Visit site: igan.orgInternational Agency for the Prevention of Blindness
Global eye-health alliance (mixed: NGOs, professional bodies, industry, WBU); World Sight Day, Vision Atlas, advocacy; DR Barometer study on diabetic retinopathy with IDF and IFA. Not patient-led.
For Diabetic eye disease
Visit site: iapb.orgInternational Alliance of ALS/MND Associations
Global network of ALS/MND associations: find a national association, patient and caregiver resources, advocacy, research and events.
For ALS (motor neurone disease)
Visit site: als-mnd.orgInternational Alliance of Dermatology Patient Organizations (GlobalSkin)
Global alliance of dermatology patient organisations across many skin diseases; research (e.g. global patient surveys), advocacy and capacity building for member groups.
For Psoriasis, Atopic dermatitis (eczema), Hidradenitis suppurativa and 1 more
Visit site: globalskin.org
International Brain Tumour Alliance (IBTA)
Worldwide network of brain tumour patient and carer groups, with a free magazine and a clinical trials portal.
For Glioblastoma, Meningioma, Brain metastases
Visit site: theibta.orgInternational Bureau for Epilepsy (IBE)
Worldwide organisation of people with epilepsy, their families and professionals, founded in 1961, with national member associations (chapters) in every region: International Epilepsy Day, youth and women-and-epilepsy programmes, advocacy toolkits and a list of its chapters.
For Epilepsy
Visit site: ibe-epilepsy.orgInternational Community of Women Living with HIV
Global network by and for women living with HIV; advocacy in global policy forums, grassroots-driven priorities, ten regional networks incl. Europe and Central Asia.
For HIV
Visit site: icwglobal.orgInternational Consumer Support for Infertility
A network of 53 patient groups in 41 countries working for good, affordable infertility care.
For Female infertility
Visit site: icsicommunity.orgInternational Diabetes Federation
Umbrella of national diabetes associations (people with diabetes and professionals): diabetes information, World Diabetes Day, advocacy, KiDS school programme, Blue Circle Voices.
For Type 1 diabetes, Type 2 diabetes, Diabetic eye disease
Visit site: idf.orgInternational Federation for Spina Bifida and Hydrocephalus
Federation of over 100 spina bifida and hydrocephalus groups, working on prevention, health rights and awareness.
For Hydrocephalus
Visit site: ifglobal.org
International Federation of Crohn's & Ulcerative Colitis Associations (formerly EFCCA)
Federation of national Crohn's and colitis patient associations: patient education (IFCCA Academy), reports, research involvement, World IBD Day and advocacy.
For Crohn's disease, Ulcerative colitis
Visit site: ifcca-ibd.orgInternational Federation of Hard of Hearing People
Speaks up for hard of hearing people; publishes papers and runs webinars and education projects.
For Hearing loss
Visit site: ifhoh.org
International Federation of Kidney Foundations - World Kidney Alliance
Global federation of kidney foundations and some kidney patient associations; co-organises World Kidney Day with ISN, advocacy for kidney health. Mixed, mostly foundations.
For Chronic kidney disease, Nephrotic syndrome
Visit site: ifkf.org
International Federation of Psoriasis Associations
Global federation of national and regional psoriasis patient associations; advocates for access to care for psoriasis and psoriatic arthritis and coordinates World Psoriasis Day.
For Psoriasis, Psoriatic arthritis
Visit site: ifpa-pso.com
International Gaucher Alliance
International voice for Gaucher patient groups: disease information, support for newly diagnosed, help with charitable treatment access, webinars, advocacy training, International Gaucher Day.
For Gaucher disease
Visit site: gaucheralliance.org
International Gynecologic Cancer Advocacy Network
Advocacy network of the International Gynecologic Cancer Society: annual advocacy summit, education, advocacy directory; free patient education for survivors and carers
For Ovarian cancer, Cervical cancer, Endometrial cancer
Visit site: igcs.org
International Huntington Association
Worldwide federation connecting people with HD, at-risk family members and professionals to national associations; HD Focus news; help to set up local associations.
For Huntington's disease
Visit site: huntington-disease.orgInternational ITP Alliance
Partnership of ITP patient groups across continents; shares information and runs Global ITP Awareness Week.
For Immune thrombocytopenia (ITP)
Visit site: globalitp.orgInternational Kidney Cancer Coalition
Global collaboration of kidney cancer patient groups: global patient survey, decision aids, nutrition guide, trials database, World Kidney Cancer Day
For Kidney cancer
Visit site: ikcc.orgInternational Migraine & Headache Alliance
New international committee launched by EMHA (July 2026) to bring migraine patient advocacy to the world.
For Migraine
Visit site: emhalliance.orgInternational Mito Patients
Brings national mito patient groups together to give patients a stronger voice internationally.
For Mitochondrial disease
Visit site: mitopatients.orgInternational Neuroendocrine Cancer Alliance
Global alliance of neuroendocrine cancer patient groups: local group finder, NET info packs, trial information, advocacy toolkit, NET Cancer Day
For Neuroendocrine tumours
Visit site: incalliance.org
International Osteoporosis Foundation
Global network of national osteoporosis societies (patient and medical): risk check, patient information, Global Patient Charter, World Osteoporosis Day, find your national society.
For Osteoporosis
Visit site: osteoporosis.foundationInternational Patient Organisation for Primary Immunodeficiencies (IPOPI)
Links national patient groups for primary immunodeficiencies and works for early diagnosis and care worldwide.
For Haemophagocytic lymphohistiocytosis
Visit site: ipopi.orgInternational Pompe Association
Federation of Pompe patient groups worldwide: patient publications in 15 languages, International Pompe Day, community advisory board, patient survey, sharing of knowledge among groups.
For Pompe disease
Visit site: worldpompe.orgInternational Progressive MS Alliance
MS organisations from many countries working together to speed up treatments for progressive MS.
For Multiple sclerosis
Visit site: progressivemsalliance.org
Lewy Body Dementia Association
Main LBD patient organisation (US-based): Lewy Line support, free online Lewy Learning Center, support groups, trial tracker, webinars.
For Lewy body dementia
Visit site: lbda.org
Lewy Body International
Cooperative alliance of Lewy body dementia organisations worldwide: awareness (World Lewy Body Dementia Day, 28 January), education, care-partner support via members.
For Lewy body dementia
Visit site: lewybodyint.org
Long COVID Europe
Patient-run European network of Long COVID associations: shares information and contacts, pushes for recognition, patient-focused research and rehabilitation; WHO/Europe collaborating partner.
For Long COVID and ME/CFS
Visit site: longcovideurope.org
Lung Cancer Europe (LuCE)
European umbrella of lung cancer patient groups in 28 countries.
For Lung cancer, Mesothelioma
Visit site: lungcancereurope.euLupus Europe
European umbrella of national lupus patient organisations; patient information library, videos, LupusGPT, exercise programme, clinical trial info, youth and patient panels, EU advocacy.
For Lupus (SLE)
Visit site: lupus-europe.orgLymphoma Coalition
Worldwide network of lymphoma and CLL patient groups: global patient survey, data and advocacy.
For Chronic lymphocytic leukaemia, Diffuse large B-cell lymphoma, Follicular lymphoma and 3 more
Visit site: lymphomacoalition.org
Make Sense Campaign
European head and neck cancer awareness campaign: symptom and HPV information, survivor resources, annual awareness week with events in many countries
For Head and neck cancer
Visit site: makesensecampaign.euMelanoma Patient Network Europe
Volunteer network of European melanoma patients, carers and advocates: science resources, clinical trial guidance, workshops, forum and mailing list
For Melanoma
Visit site: mpneurope.org
MPN Advocates Network
Global network of MPN patient groups: advocacy education, MPN Awareness Day, global patient survey, webinars, MPN Horizons conference.
For Myeloproliferative neoplasms
Visit site: mpn-advocates.net
MS International Federation (MSIF)
Global MS federation: 'Find MS support near you' search by country, Atlas of MS.
For Multiple sclerosis, Optic neuritis
Visit site: msif.orgMSA United Research
Consortium of MSA charities from several countries that funds research, supports families and raises awareness.
For Multiple system atrophy
Visit site: msaunited.org
Myeloma Patients Europe (MPE)
European umbrella of myeloma patient groups, with a list of members by country.
For Multiple myeloma, Amyloidosis
Visit site: mpeurope.orgNF Patients United
Links national NF patient groups across Europe to share good practice and push for better care and information.
For Neurofibromatosis type 1
Visit site: nf-patients.euPancreatic Cancer Europe
Multi-stakeholder platform of experts and patient groups: news, research map, clinical trial listings, patient information.
For Pancreatic cancer
Visit site: pancreaticcancereurope.euPKD International
Geneva-based international association of national PKD patient groups (also open to clinicians/scientists): ADPKD patient route map, publications, studies, global members meeting.
For Polycystic kidney disease
Visit site: pkdinternational.orgPulmonary Hypertension Association Europe
Federation of national PH patient associations (plus associated members worldwide): PH information, specialist finder, awareness campaigns, access-to-treatment advocacy.
For Pulmonary arterial hypertension
Visit site: phaeurope.org
Retina International
Global umbrella of patient organisations for inherited and acquired retinal conditions (incl. retinitis pigmentosa, AMD); condition information, patient resources, research and advocacy.
For Retinitis pigmentosa, Macular degeneration, Diabetic eye disease
Visit site: retina-international.org
Sarcoma Patient Advocacy Global Network (formerly Sarcoma Patients EuroNet)
Global network of national sarcoma, GIST and desmoid patient groups: resource hub, disease information, conferences, webinars, Sarcoma Awareness Month
For Sarcoma
Visit site: sarcoma-patients.org
Sjögren Europe
European federation of national Sjögren's patient associations; awareness, patient involvement in research and policy, information and care advocacy.
For Sjögren's disease
Visit site: sjogreneurope.org
SMA Europe
Umbrella of national SMA patient organisations led by people with SMA and families: clinical trials finder, research funding, access advocacy, care symposia.
For Spinal muscular atrophy
Visit site: sma-europe.eu
Stroke Alliance for Europe
Voice of stroke survivors in Europe: Stroke Action Plan for Europe, European Life After Stroke Forum, prevention information, support for national stroke support organisations.
For Stroke
Visit site: safestroke.eu
T1International
Patient-led global non-profit on access to insulin and diabetes supplies: advocacy training, #insulin4all chapters, resources and help for people who cannot afford insulin.
For Type 1 diabetes
Visit site: t1international.com
TB Europe Coalition
Network of civil society organisations and activists in the WHO Europe region; supports national TB advocacy, coordinates regional/international advocacy, empowers TB-affected communities.
For Tuberculosis
Visit site: tbcoalition.eu
Thalassaemia International Federation
Covers thalassaemia, sickle cell disease and other rare anaemias: patient education, TIFLIX video library; set up and runs the secretariat of the International Active SCD Group (IASG), an informal network of patient-led sickle cell organisations.
For Sickle cell disease, Thalassaemia
Visit site: thalassaemia.org.cyThe Guthy-Jackson Charitable Foundation
NMOSD foundation (US-based, international reach): newly-diagnosed guides, patient resource guide, NMO Patient Days, directory of advocacy groups, expert-clinician map, research.
For Neuromyelitis optica (NMOSD)
Visit site: guthyjacksonfoundation.org
The Sumaira Foundation for NMO
NMOSD and MOGAD patient foundation (US-based): support groups, caregiver conversations, patient days, education brochures, webinars, assistance programmes.
For Neuromyelitis optica (NMOSD)
Visit site: sumairafoundation.org
Thyroid Federation International
Global federation of thyroid patient organisations (all thyroid conditions, incl. some thyroid cancer groups): awareness week, congress, newsletters, webinars
For Thyroid cancer, Graves' disease and hyperthyroidism, Hypothyroidism
Visit site: thyroid-federation.orgTics and Tourette Across the Globe (TTAG)
An international umbrella of tic and Tourette groups that raises awareness and helps people find local support.
For Tourette syndrome
Visit site: ticsandtourette.org
Vasculitis International
Global umbrella network for vasculitis patient advocacy groups and expert centres; directory of patient groups by country and of expert hospitals, patient summits, help to start groups where none exist.
For ANCA-associated vasculitis, Giant cell arteritis
Visit site: vasculitisint.comVitiligo International Patient Organizations Committee (VIPOC)
Worldwide alliance of vitiligo patient groups that raises awareness and supports research.
For Vitiligo
Visit site: vipoc.org
Workgroup of European Cancer Patient Advocacy Networks
Network of pan-European cancer patient umbrella groups (including the blood cancer networks): joint advocacy, WECAN Academy training for patient advocates, patient experience data courses.
For Multiple myeloma, Acute myeloid leukaemia, Diffuse large B-cell lymphoma and 8 more
Visit site: wecanadvocate.euWorld Autism Organisation
Volunteer-run network that links autism associations and holds a world congress and webinars for families.
For Autism
Visit site: worldautismorganisation.com
World Bladder Cancer Patient Coalition
Global coalition of bladder cancer patient groups: patient and carer survey, awareness month, annual patient forum, factsheets, start-up guide for new groups
For Bladder cancer
Visit site: worldbladdercancer.org
World Blind Union
Global umbrella of organisations of blind and partially sighted people; advocacy on accessibility, Marrakesh Treaty, braille literacy, inclusive development; scholarships and awards.
For Retinitis pigmentosa, Macular degeneration
Visit site: wbu.ngoWorld Cerebral Palsy Day
A global day each 6 October, run with partner groups, for and by people with cerebral palsy.
For Cerebral palsy
Visit site: worldcpday.org
World Duchenne Organization
Global umbrella of Duchenne and Becker parent/patient groups (formerly UPPMD): care and research information, Accredited Duchenne Centers, DMD Emergency Program, Duchenne Patient Academy.
For Duchenne muscular dystrophy
Visit site: worldduchenne.org
World Endometriosis Organisations
Worldwide coalition of not-for-profit endometriosis patient organisations (affiliated with the World Endometriosis Society) collaborating on education, advocacy and research.
For Endometriosis
Visit site: endometriosis.org
World Federation for Mental Health
International mental health advocacy federation; founder of World Mental Health Day; congresses and courses.
For Depression, Schizophrenia, Bipolar disorder
Visit site: wfmh.global
World Federation of Hemophilia
Global federation of national hemophilia and bleeding-disorder societies: treatment guidelines, e-learning, humanitarian aid for emerging countries, advocacy training, help finding a national society or treatment centre.
For Haemophilia
Visit site: wfh.orgWorld Federation of the Deaf
Works for the human rights and sign language rights of deaf people, and for legal recognition of sign languages.
For Hearing loss
Visit site: wfdeaf.orgWorld Glaucoma Patient Network (formerly World Glaucoma Patient Association)
Worldwide listing of glaucoma patient support groups, guide to starting a local group, resources for support groups; linked to World Glaucoma Week.
For Glaucoma
Visit site: worldgpa.com
World Heart Federation
Global cardiovascular federation (mixed: heart foundations, medical societies and advocacy groups, not purely patient-led); campaigns, policy and World Heart Day.
For Heart failure, Atrial fibrillation, Coronary artery disease and 5 more
Visit site: world-heart-federation.orgWorld Hepatitis Alliance
Global network of organisations of people affected by viral hepatitis; World Hepatitis Day, advocacy for elimination by 2030, community research, free Community Impact Programme course.
For Hepatitis B
Visit site: worldhepatitisalliance.orgWorld Hypertension League
Professional body: federation of national hypertension societies working on blood pressure prevention and control; public information. Not patient-led.
For High blood pressure
Visit site: whleague.org
World Lupus Federation
Global coalition of lupus patient organisations; World Lupus Day (10 May), international patient surveys, training and tools for lupus groups.
For Lupus (SLE)
Visit site: worldlupusfederation.orgWorld ME Alliance
Global alliance of national ME/CFS organisations (formerly IAfME): coordinated policy dialogue, shared advocacy resources; also covers post-COVID conditions.
For Long COVID and ME/CFS
Visit site: worldmealliance.org
World Obesity Federation
Professional body (mixed): federation of national/regional obesity associations, some representing people with lived experience; World Obesity Day, policy, patient portal.
For Obesity
Visit site: worldobesity.orgWorld Ovarian Cancer Coalition
Global network of 200+ partner groups: research, awareness and advocacy to cut ovarian cancer deaths.
For Ovarian cancer
Visit site: worldovariancancercoalition.org
World Pancreatic Cancer Coalition (WPCC)
Global coalition of pancreatic cancer organisations: member directory with locator map and profiles, World Pancreatic Cancer Day.
For Pancreatic cancer
Visit site: worldpancreaticcancercoalition.org
World Stroke Organization
Global stroke body running World Stroke Day; supports stroke support organisations (SSOs) and has a lay membership, with a regional SSO finder.
For Stroke
Visit site: world-stroke.orgWorldwide Adrenal and Pituitary Organizations (WAPO)
Global network of pituitary and adrenal patient groups that shares information and speaks for patients.
For Cushing's syndrome, Male hypogonadism (low testosterone), Pituitary tumours
Visit site: wapo.orgY+ Global
A global network of young people living with HIV that helps them have a say in HIV decisions.
For HIV
Visit site: yplusglobal.org
Youth Cancer Europe (YCE)
Patient-led network of young people (adolescents and young adults) affected by cancer: peer community, help finding local support, and advocacy.
For Childhood cancers
Visit site: youthcancereurope.orgEuropean Patients' Forum (EPF)
Umbrella of European patient organisations and national patient coalitions.
For any disease
Visit site: eu-patient.eu
International Alliance of Patients' Organizations
Global alliance of patient organisations of all diseases, promoting patient-centred healthcare.
For any disease
Visit site: iapo.org.uk
Do you know an organisation we missed? Write to support@frontlightresearch.com and we will add it.