Support organisations
Patient groups and helplines near you, for people with a disease and for their families.
446 organisations in United States
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.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.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.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.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.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 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.orgRein 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.netThe 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.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.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.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
Visit site: alz.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.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
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.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
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 1 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 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.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.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.org
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.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.org
Cervivor
Nonprofit cervical cancer support group and community raising awareness about the disease.
For Cervical cancer
Visit site: cervivor.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
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.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 1 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.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.org
CureSearch
Nonprofit identifying and funding the most promising science to bring new treatments to children with cancer.
For Childhood cancers
Visit site: curesearch.orgCystic 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.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.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.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.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
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
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.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)
Visit site: fattyliverfoundation.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.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.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.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.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.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.orgHearts 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.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.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.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 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.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.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 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.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.orgMiles for Migraine
Non-profit improving lives of migraine patients, raising awareness and funding research.
For Migraine
Visit site: milesformigraine.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 2 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.orgNational 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.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 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.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.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.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.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.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.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.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.org
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.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.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.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.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.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 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.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 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.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.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.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.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.orgUnited Stroke Alliance
Nonprofit serving stroke survivors, caregivers and communities with stroke camps, youth education, BE-FAST awareness and a free online recovery video series.
For Stroke
Visit site: unitedstrokealliance.org
UsAgainstAlzheimer's
US nonprofit advocacy organization working to stop Alzheimer's disease through advocacy, research engagement and support for people affected.
For Alzheimer disease
Visit site: usagainstalzheimers.orgUsher Syndrome Coalition
Massachusetts-based coalition serving the Usher syndrome community with information, parent resources, a contact database and research data collection.
For Retinitis pigmentosa
Visit site: usher-syndrome.org
Vasculitis Foundation
US-based nonprofit that supports, educates and empowers people with vasculitis, including ANCA-associated vasculitis, and funds research.
For ANCA-associated vasculitis
Visit site: vasculitisfoundation.orgWe Are TB
US network of tuberculosis survivors offering peer support for current TB patients and TB clinics.
For Tuberculosis
Visit site: wearetb.comWestern Neuropathy Association
US nonprofit serving people with peripheral neuropathy, offering support groups (including a CIDP group), education, advocacy and research funding.
For CIDP (chronic inflammatory demyelinating polyneuropathy)
Visit site: pnhelp.org
WomenHeart: The National Coalition for Women with Heart Disease
Education, advocacy and peer support for women living with or at risk of heart disease.
For Coronary artery disease
Visit site: womenheart.org
Young Survival Coalition
Organization for adults aged 40 and under diagnosed with breast cancer, offering community and resources.
For Metastatic breast cancer, Triple-negative breast cancer
Visit site: youngsurvival.org
ZERO Prostate Cancer
National nonprofit connecting people to prostate cancer information and support, peer community and advocacy.
For Prostate cancer
Visit site: zerocancer.orgDementia 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
Visit site: dementiaallianceinternational.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.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.govHep B United
US national coalition of community organizations working to address hepatitis B through awareness, testing and linkage to care.
For Hepatitis B
Visit site: hepbunited.org
Long COVID Alliance
Network of patient advocates, scientists and experts (1,500+ members): patient resources, research library, clinical trials list, advocacy.
For Long COVID and ME/CFS
Visit site: longcovidalliance.org
Metastatic Breast Cancer Alliance
Coalition of nonprofits and advocates; member directory for finding support, MBC resources and clinical trial guidance.
For Metastatic breast cancer
Visit site: mbcalliance.org
National Organization for Rare Disorders
US national rare disease alliance of patient organizations: education, patient assistance programs, rare disease database and policy advocacy.
For Glioblastoma, Acute myeloid leukaemia, Childhood cancers and 34 more
Visit site: rarediseases.org
Stop TB USA
US coalition working to eliminate tuberculosis through awareness, advocacy and community engagement.
For Tuberculosis
Visit site: stoptbusa.orgABC 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.org
Alzheimer Europe
Umbrella of national Alzheimer associations in 39 countries, with a member directory.
For Alzheimer disease, Frontotemporal dementia, Lewy body dementia
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
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.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
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.eu
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 1 more
Visit site: digestivecancers.eu
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 4 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.org
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
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.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 Depression Association
Runs European Depression Day (October) with national partners; publishes a handbook on depression in 14 languages.
For Depression
Visit site: europeandepressionday.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 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
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
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 1 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.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.eu
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.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.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.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 1 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
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.org
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)
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
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 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.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.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
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 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 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 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.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.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
Visit site: msif.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.orgPancreatic 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
Visit site: thyroid-federation.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
Visit site: vasculitisint.com
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.eu
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.ngo
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 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 1 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.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.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.