Patient organisation umbrella bodies
Umbrella bodies connect the national patient organisations of a disease, or of patients in general. They rarely help one person directly, but they know the groups that do.
131 umbrella bodies
ABC 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 leukemia, 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 esophageal 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: engage.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: paedcan.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 esophageal 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 leukemia and 1 more
Visit site: health.ec.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 leukemia, 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 esophageal 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.org
Global 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 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 leukemia, 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