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Support organisations

Patient groups and helplines near you, for people with a disease and for their families.

100 organisations for Duchenne muscular dystrophy in all countries

  • Patient group

    Muscular Dystrophy Association of Cameroon (MDA Cameroon)

    Association of children, parents and caregivers affected by muscular dystrophy and rare diseases in Cameroon, doing awareness and inclusion work.

    For Duchenne muscular dystrophy

    Visit site: acohof.org
  • Patient groupAll of United Kingdom

    Action Duchenne

    Charity in the United Kingdom for people with Duchenne muscular dystrophy and their families; member of World Duchenne Organization.

    For Duchenne muscular dystrophy

    Visit site: actionduchenne.org
  • Patient groupAll of Argentina

    ADM Argentina

    ADM Argentina: patient organisation in Argentina supporting people with Duchenne/Becker muscular dystrophy; member of WDO.

    For Duchenne muscular dystrophy

    Visit site: adm.org.ar
  • Patient groupAll of France

    AFM-Téléthon

    French patient association for people with neuromuscular diseases, including myasthenia gravis, SMA and Duchenne; member of EuMGA, SMA Europe and WDO.

    For Myasthenia gravis, Spinal muscular atrophy, Duchenne muscular dystrophy

    Visit site: afm-telethon.fr
  • Patient groupAll of Brazil

    Aliança Distrofia Brasil (ADB)

    Aliança Distrofia Brasil (ADB): patient organisation in Brazil supporting people with Duchenne/Becker muscular dystrophy; member of WDO.

    For Duchenne muscular dystrophy

    Visit site: distrofiabrasil.org.br
  • Patient groupAll of Czechia

    Asociace muskulárních dystrofiků v ČR

    Patient association in Czech Republic for people with neuromuscular diseases, including Duchenne muscular dystrophy and their families; member of EAMDA.

    For Duchenne muscular dystrophy, Pompe disease

    Visit site: amd-mda.cz
  • Patient groupAll of Romania

    Asociația DMD Care

    Patient association in Romania for people with Duchenne muscular dystrophy and their families; member of World Duchenne Organization.

    For Duchenne muscular dystrophy

    Visit site: dmdcare.org
  • Patient groupAll of Romania

    Asociația Parent Project România

    Patient association in Romania for people with Duchenne muscular dystrophy and their families; member of World Duchenne Organization.

    For Duchenne muscular dystrophy

    Visit site: parentproject.org.ro
  • Patient groupAll of Slovakia

    Belasý motýľ

    Patient association in Slovakia for people with neuromuscular diseases, including Duchenne muscular dystrophy and their families; member of EAMDA.

    For Duchenne muscular dystrophy

    Visit site: belasymotyl.sk
  • Patient groupAll of India

    BharathMD Foundation

    BharathMD Foundation: foundation in India supporting people with Duchenne/Becker muscular dystrophy; member of WDO.

    For Duchenne muscular dystrophy

    Visit site: bharathmd.org
  • Patient groupAll of Brazil

    Casa Hunter

    Casa Hunter: patient organisation in Brazil supporting people with rare diseases; member of RDI.

    For ALS (motor neurone disease), Amyloidosis, Cystic fibrosis and 16 more

    Visit site: casahunter.org.br
  • Patient groupAll of United States

    CureDuchenne

    US nonprofit funding research and providing education and community programs to cure Duchenne muscular dystrophy.

    For Duchenne muscular dystrophy

    Visit site: cureduchenne.org
  • Patient groupAll of Germany

    Deutsche Gesellschaft für Muskelkranke e.V. (DGM)

    German patient association for people with neuromuscular diseases, including ALS, SMA and Duchenne muscular dystrophy; member of the ALS/MND Alliance, SMA Europe and WDO.

    For ALS (motor neurone disease), Spinal muscular atrophy, Duchenne muscular dystrophy

    Visit site: dgm.org
  • Patient groupAll of Germany

    Deutsche Muskelschwund-Hilfe e.V.

    Hamburg-based charity supporting families affected by neuromuscular diseases across Germany with counselling, aid applications, school assistance and research funding.

    For Duchenne muscular dystrophy

    Visit site: muskelschwund.de
  • Patient groupAll of Chile

    Dimus Chile – Asociación Distrofia Muscular Chile

    Dimus Chile – Asociación Distrofia Muscular Chile: patient organisation in Chile supporting people with Duchenne/Becker muscular dystrophy; member of RDI.

    For Duchenne muscular dystrophy

    Visit site: dimuschile.cl
  • Patient groupAll of Türkiye

    DMD Aileleri Derneği

    Patient association in Türkiye for people with Duchenne muscular dystrophy and their families; member of World Duchenne Organization.

    For Duchenne muscular dystrophy

    Visit site: dmdaileleri.org
  • Patient groupAll of Slovenia

    DMD Slovenija

    Patient association in Slovenia for people with Duchenne muscular dystrophy and their families; member of World Duchenne Organization.

    For Duchenne muscular dystrophy

    Visit site: dmd-slovenija.si
  • Patient groupAll of Serbia

    DMD Srbija

    Patient association in Serbia for people with Duchenne muscular dystrophy and their families; member of World Duchenne Organization.

    For Duchenne muscular dystrophy

    Visit site: dmdsrbija.rs
  • Patient groupAll of Türkiye

    DMD Türkiye

    Patient association in Türkiye for people with Duchenne muscular dystrophy and their families; member of World Duchenne Organization.

    For Duchenne muscular dystrophy

    Visit site: dmdturkiye.org
  • Patient groupAll of Slovenia

    Društvo distrofikov Slovenije

    Patient association in Slovenia for people with neuromuscular diseases, including Duchenne muscular dystrophy and their families; member of EAMDA.

    For Duchenne muscular dystrophy

    Visit site: drustvo-distrofikov.si
  • Patient groupAll of Australia

    Duchenne Australia

    Duchenne Australia: patient organisation in Australia supporting people with Duchenne/Becker muscular dystrophy; member of WDO.

    For Duchenne muscular dystrophy

    Visit site: duchenneaustralia.org
  • Patient groupAll of Chile

    Duchenne Chile

    Duchenne Chile: patient organisation in Chile supporting people with Duchenne/Becker muscular dystrophy; member of WDO.

    For Duchenne muscular dystrophy

    Visit site: duchenne.cl
  • Patient groupAll of Germany

    Duchenne Deutschland e.V.

    Self-help association in Bochum for children and parents affected by Duchenne muscular dystrophy, with awareness work and symposia, supported by a foundation.

    For Duchenne muscular dystrophy

    Visit site: duchenne-deutschland.de
  • Patient groupAll of United Kingdom

    Duchenne Family Support Group

    Charity in the United Kingdom for people with Duchenne muscular dystrophy and their families; member of World Duchenne Organization.

    For Duchenne muscular dystrophy

    Visit site: dfsg.org.uk
  • Patient groupAll of Belgium

    Duchenne Parent Project België

    Patient association in Belgium for people with Duchenne muscular dystrophy and their families; member of World Duchenne Organization.

    For Duchenne muscular dystrophy

    Visit site: duchenneparentproject.be
  • Patient groupAll of Spain

    Duchenne Parent Project España

    Patient association in Spain for people with Duchenne muscular dystrophy and their families; member of World Duchenne Organization.

    For Duchenne muscular dystrophy

    Visit site: duchenne-spain.org
  • Patient groupAll of Netherlands

    Duchenne Parent Project Nederland

    Patient association in the Netherlands for people with Duchenne muscular dystrophy and their families; member of World Duchenne Organization.

    For Duchenne muscular dystrophy

    Visit site: duchenne.nl
  • Patient groupAll of Switzerland

    Duchenne Schweiz

    Swiss association with a portal for families affected by Duchenne; it collects information, sits on committees and raises funds for support requests.

    For Duchenne muscular dystrophy

    Visit site: duchenne-schweiz.ch
  • Patient groupAll of United Kingdom

    Duchenne UK

    Charity in the United Kingdom for people with Duchenne muscular dystrophy and their families; member of World Duchenne Organization.

    For Duchenne muscular dystrophy

    Visit site: duchenneuk.org
  • Patient groupAll of Estonia

    Eesti Lihasehaigete Selts

    Estonian society for people with neuromuscular diseases and their families; provides information, support and an ALS/MND fund.

    For Duchenne muscular dystrophy, Spinal muscular atrophy, Myasthenia gravis and 1 more

    Visit site: els.ee
  • Patient groupAll of Mexico

    Enlace Distrofia Muscular Duchenne Becker, A.C.

    Enlace Distrofia Muscular Duchenne Becker, A.C.: patient organisation in Mexico supporting people with Duchenne/Becker muscular dystrophy; member of WDO.

    For Duchenne muscular dystrophy

    Visit site: enlaceac.org
  • Patient groupAll of Norway

    Foreningen for Muskelsyke

    Patient association in Norway for people with neuromuscular diseases, including myasthenia gravis and their families; member of EuMGA.

    For Myasthenia gravis, Pompe disease, Spinal muscular atrophy and 1 more

    Visit site: ffm.no
  • Patient groupAll of Colombia

    Fundación Colombiana para Enfermedades Huérfanas (FUNCOLEHF)

    Fundación Colombiana para Enfermedades Huérfanas (FUNCOLEHF): foundation in Colombia supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: enfermedadeshuerfanas.org.co
  • Patient groupAll of Poland

    Fundacja StopDuchenne

    Foundation in Poland for people with Duchenne muscular dystrophy and their families; member of World Duchenne Organization.

    For Duchenne muscular dystrophy

    Visit site: stopduchenne.pl
  • Patient groupAll of United States

    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 leukemia, Hodgkin lymphoma and 32 more

    Visit site: rarediseases.info.nih.gov
  • Patient groupAll of Hungary

    Gyógyító Jószándék Alapítvány

    Foundation in Hungary for people with Duchenne muscular dystrophy and their families; member of World Duchenne Organization.

    For Duchenne muscular dystrophy

    Visit site: duchenne.hu
  • Patient groupAll of India

    Indian Association of Muscular Dystrophy (IAMD)

    Registered Indian society serving people with muscular dystrophy, offering diagnosis, therapies, routine health checkups and a patient registration service.

    For Duchenne muscular dystrophy

    Visit site: iamd.in
  • Patient groupAll of Sweden

    Insamlingsstiftelsen för muskeldystrofiforskning (SMDF)

    Swedish fundraising foundation for muscular dystrophy research, including Duchenne muscular dystrophy; member of the World Duchenne Organization.

    For Duchenne muscular dystrophy

    Visit site: smdf.se
  • Patient groupAll of Brazil

    Instituto Vidas Raras

    Rare Lives Institute: patient organisation in Brazil supporting people with rare diseases; member of RDI, IPA.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: vidasraras.org.br
  • Patient groupAll of Lebanon

    LAND for Hope

    LAND for Hope: patient organisation in Lebanon supporting people with Duchenne/Becker muscular dystrophy; member of WDO.

    For Duchenne muscular dystrophy

    Visit site: landforhope.org
  • Patient groupAll of Malaysia

    Malaysian Rare Disorders Society (MRDS)

    Malaysian Rare Disorders Society (MRDS): patient organisation in Malaysia supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: mrds.org.my
  • Patient groupAll of India

    MD India (Muscular Dystrophy Association India)

    Indian association for people with muscular dystrophy and their parents, offering DMD resources, care booklets, physiotherapy and nutrition info, registries and sport.

    For Duchenne muscular dystrophy

    Visit site: mdindia.net
  • Patient groupAll of United States

    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
  • Patient groupAll of Singapore

    Muscular Dystrophy Association (Singapore)

    Singapore association for people with muscular dystrophy and their families, offering therapy, programmes, activities like boccia and power soccer, and resources.

    For Spinal muscular atrophy, Duchenne muscular dystrophy

    Visit site: mdas.org.sg
  • Patient groupAll of Cyprus

    Muscular Dystrophy Association Cyprus

    Patient association in Cyprus for people with neuromuscular diseases, including spinal muscular atrophy (SMA) and Duchenne muscular dystrophy and their families; member of SMA Europe and World Duchenne Organization.

    For Spinal muscular atrophy, Duchenne muscular dystrophy

    Visit site: mdacyprus.org
  • Patient groupAll of Greece

    Muscular Dystrophy Association Hellas

    Patient association in Greece for people with neuromuscular diseases, including spinal muscular atrophy (SMA) and Duchenne muscular dystrophy and their families; member of SMA Europe and World Duchenne Organization.

    For Spinal muscular atrophy, Duchenne muscular dystrophy

    Visit site: mdahellas.gr
  • Patient groupAll of Canada

    Muscular Dystrophy Canada

    National charity supporting individuals and families living with neuromuscular disorders, including muscular dystrophies, with services and research funding.

    For Duchenne muscular dystrophy

    Visit site: muscle.ca
  • Patient groupAll of Ireland

    Muscular Dystrophy Ireland

    Irish national charity for people with muscular dystrophy and related neuromuscular conditions, including myasthenia gravis, offering services and information.

    For Myasthenia gravis, Duchenne muscular dystrophy

    Visit site: mdi.ie
  • Patient groupAll of South Africa

    Muscular Dystrophy South Africa (MDSA)

    Muscular Dystrophy South Africa (MDSA): patient organisation in South Africa supporting people with Duchenne/Becker muscular dystrophy; member of WDO.

    For Duchenne muscular dystrophy

    Visit site: mdsa.org.za
  • Patient groupAll of Denmark

    Muskelsvindfonden

    Danish patient association for people with neuromuscular diseases, including ALS, myasthenia gravis, SMA and Duchenne; member of the ALS/MND Alliance, EuMGA, SMA Europe, WDO and EAMDA.

    For ALS (motor neurone disease), Myasthenia gravis, Spinal muscular atrophy and 1 more

    Visit site: muskelsvindfonden.dk
  • Patient groupAll of Italy

    Parent Project aps

    Patient association in Italy for people with Duchenne muscular dystrophy and their families; member of World Duchenne Organization.

    For Duchenne muscular dystrophy

    Visit site: parentproject.it
  • Patient groupAll of United States

    Parent 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.org
  • Patient groupAll of Poland

    Parent Project Muscular Dystrophy Polska

    Patient association in Poland for people with Duchenne muscular dystrophy and their families; member of World Duchenne Organization.

    For Duchenne muscular dystrophy

    Visit site: parentproject.org.pl
  • Patient groupAll of Czechia

    Parent Project, z.s.

    Patient association in Czech Republic for people with Duchenne muscular dystrophy and their families; member of World Duchenne Organization.

    For Duchenne muscular dystrophy

    Visit site: parentproject.cz
  • Patient groupAll of Poland

    Polskie Towarzystwo Chorób Nerwowo-Mięśniowych

    Patient association in Poland for people with neuromuscular diseases, including Duchenne muscular dystrophy and spinal muscular atrophy (SMA) and their families; member of EAMDA.

    For Duchenne muscular dystrophy, Spinal muscular atrophy

    Visit site: ptchnm.org.pl
  • Patient groupAll of India

    PPMD India

    PPMD India: patient organisation in India supporting people with Duchenne/Becker muscular dystrophy; member of WDO.

    For Duchenne muscular dystrophy

    Visit site: ppmdindia.org
  • Patient groupAll of Switzerland

    Progena – Swiss Duchenne Foundation

    Swiss foundation and patient organisation informing Duchenne families, organising conferences and supporting the Swiss Duchenne and Becker patient registry.

    For Duchenne muscular dystrophy

    Visit site: progena.ch
  • Patient groupAll of Ghana

    Rare Diseases Ghana Initiative

    Rare Diseases Ghana Initiative: patient organisation in Ghana supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: rarediseaseghana.org
  • Patient groupAll of Nepal

    Rare Diseases Society Nepal

    Rare Diseases Society Nepal: patient organisation in Nepal supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: rarediseasenepal.org
  • Patient groupAll of Kenya

    Rare Disorders Kenya

    Rare Disorders Kenya: patient organisation in Kenya supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: rarediseasekenya.org
  • Patient groupAll of Zimbabwe

    Rare Disorders Zimbabwe (RDZ)

    Rare Disorders Zimbabwe (RDZ): patient organisation in Zimbabwe supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: raredisorderszim.org
  • Patient groupAll of Albania

    Shoqata e Sëmundjeve të Rralla

    The Rare Diseases Association Albania is an NGO organising patients and active people in the rare disease field to improve their quality of life.

    For Glioblastoma, Acute myeloid leukemia, Childhood cancers and 34 more

    Visit site: rda-al.com
  • Patient groupAll of Thailand

    Thai Rare Disease Foundation

    Thai Rare Disease Foundation: foundation in Thailand supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: thairdf.org
  • Patient groupAll of Türkiye

    Türkiye Kas Hastalıkları Derneği

    Patient association in Türkiye for people with neuromuscular diseases, including Duchenne muscular dystrophy and spinal muscular atrophy (SMA) and their families; member of EAMDA.

    For Duchenne muscular dystrophy, Spinal muscular atrophy

    Visit site: kasder.org.tr
  • Patient groupAll of United Arab Emirates

    UAE Rare Disease Society

    UAE Rare Disease Society: patient organisation in United Arab Emirates supporting people with rare diseases.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: uaerds.ae
  • Patient groupAll of Russia

    Благотворительный фонд «Гордей»

    Charity in Russia for people with Duchenne muscular dystrophy and their families; member of World Duchenne Organization.

    For Duchenne muscular dystrophy

    Visit site: dmd-russia.ru
  • Patient groupAll of Bulgaria

    Българска асоциация за невромускулни заболявания

    Patient association in Bulgaria for people with neuromuscular diseases, including Duchenne muscular dystrophy and spinal muscular atrophy (SMA) and their families; member of EAMDA.

    For Duchenne muscular dystrophy, Spinal muscular atrophy

    Visit site: banmz.bg
  • Patient groupAll of Ukraine

    Дюшен Україна

    Patient association in Ukraine for people with Duchenne muscular dystrophy and their families; member of World Duchenne Organization.

    For Duchenne muscular dystrophy

    Visit site: dmd.org.ua
  • Patient groupAll of Iran

    بنیاد بیماری های نادر ایران

    Rare Disease Foundation of Iran (RADOIR): foundation in Iran supporting people with rare diseases; member of RDI, FIN.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: raredisease.ir
  • Patient groupAll of China

    北京至爱杜氏肌营养不良关爱中心

    Beijing non-profit supporting DMD/BMD patients and families in China with peer exchange, disease information, aid projects and help with rehabilitation and psychosocial support.

    For Duchenne muscular dystrophy

    Visit site: china-dmd.org.cn
  • Patient groupAll of China

    病痛挑战基金会

    Illness Challenge Foundation: foundation in China supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: chinaicf.org
  • Patient groupAll of Taiwan

    財團法人罕見疾病基金會

    Taiwan Foundation for Rare Disorders: foundation in Taiwan supporting people with Fabry disease, Pompe disease; member of IPA, FIN.

    For Fabry disease, Pompe disease, Glioblastoma and 34 more

    Visit site: tfrd.org.tw
  • Patient groupAll of Hong Kong

    香港肌健協會

    Self-help organisation of people with neuromuscular diseases and their families in Hong Kong, with a disease information section on motor neurone disease (MND).

    For ALS (motor neurone disease), Duchenne muscular dystrophy

    Visit site: hknmda.org.hk
  • Umbrella organisationAll of South Korea

    (사)한국희귀·난치성질환연합회

    National federation of rare and intractable disease patient groups in Korea; runs policy advocacy, medical and welfare support and a shelter for rare disease patients and families.

    For Glioblastoma, Acute myeloid leukemia, Childhood cancers and 34 more

    Visit site: kord.or.kr
  • Umbrella organisationAll of Argentina

    Alianza Argentina de Pacientes (ALAPA)

    Alianza Argentina de Pacientes (ALAPA): national rare disease alliance in Argentina supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: alianzapacientes.org
  • Umbrella organisationAll of Dominican Republic

    Alianza Dominicana de Asociaciones de Pacientes (ADAPA)

    Alianza Dominicana de Asociaciones de Pacientes (ADAPA): national rare disease alliance in Dominican Republic supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: adapa.org.do
  • Umbrella organisationAll of Ecuador

    Alianza Nacional por la Salud (ANS)

    Quito-based alliance defending the right to health in Ecuador for patients with catastrophic, rare and orphan diseases; patient groups and foundations can join as members.

    For Glioblastoma, Acute myeloid leukemia, Childhood cancers and 34 more

    Visit site: ans.ec
  • Umbrella organisationAll of Brazil

    Associação Brasileira de Enfermidades Raras (FEBER)

    Associação Brasileira de Enfermidades Raras (FEBER): national rare disease alliance in Brazil supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: feberraras.wixsite.com
  • Umbrella organisationAll of Canada

    Canadian Organization for Rare Disorders

    National umbrella network for organizations and people with rare disorders, providing a common voice to advocate for health policy and services.

    For Glioblastoma, Acute myeloid leukemia, Childhood cancers and 34 more

    Visit site: raredisorders.ca
  • Umbrella organisationAll of Argentina

    Federación Argentina de Enfermedades Poco Frecuentes (FADEPOF)

    Federación Argentina de Enfermedades Poco Frecuentes (FADEPOF): national rare disease alliance in Argentina supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: fadepof.org.ar
  • Umbrella organisationAll of Colombia

    Federación Colombiana de Enfermedades Raras (FECOER)

    Federación Colombiana de Enfermedades Raras (FECOER): national rare disease alliance in Colombia supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: fecoer.org
  • Umbrella organisationAll of Mexico

    Federación Mexicana de Enfermedades Raras (FEMEXER)

    Federación Mexicana de Enfermedades Raras (FEMEXER): national rare disease alliance in Mexico supporting people with rare diseases; member of RDI, FIN.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: femexer.org
  • Umbrella organisationAll of Peru

    Federación Peruana de Enfermedades Raras (FEPER)

    Federación Peruana de Enfermedades Raras (FEPER): national rare disease alliance in Peru supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: feperperu.org
  • Umbrella organisationAll of India

    Indian Organization for Rare Diseases

    Indian Organization for Rare Diseases: national rare disease alliance in India supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: rarediseases.in
  • Umbrella organisationAll of Türkiye

    Nadir Hastalıklar Federasyonu

    Turkish federation founded by rare-disease patients and families to raise awareness and address their problems; members are rare-disease patient associations.

    For Glioblastoma, Acute myeloid leukemia, Childhood cancers and 34 more

    Visit site: nadir.org.tr
  • Umbrella organisationAll of Namibia

    Namibia Alliance for Rare Diseases

    Namibia Alliance for Rare Diseases: national rare disease alliance in Namibia supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: rarediseasesnamibia.org
  • Umbrella organisationAll of United States

    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 leukemia, Childhood cancers and 34 more

    Visit site: rarediseases.org
  • Umbrella organisationAll of India

    Organization for Rare Diseases India (ORDI)

    Organization for Rare Diseases India (ORDI): national rare disease alliance in India supporting people with rare diseases; member of RDI, IPA.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: ordindia.in
  • Umbrella organisationAll of Philippines

    Philippine Society for Orphan Disorders (PSOD)

    Philippine Society for Orphan Disorders (PSOD): national rare disease alliance in Philippines supporting people with rare diseases; member of RDI, IPA, FIN.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: psod.org.ph
  • Umbrella organisationAll of South Africa

    Rare Diseases South Africa

    Rare Diseases South Africa: national rare disease alliance in South Africa supporting people with rare diseases; member of RDI, IPA, FIN.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: rarediseases.co.za
  • Umbrella organisationAll of New Zealand

    Rare Disorders NZ

    Rare Disorders NZ: national rare disease alliance in New Zealand supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: raredisorders.org.nz
  • Umbrella organisationAll of Australia

    Rare Voices Australia

    Rare Voices Australia: national rare disease alliance in Australia supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: rarevoices.org.au
  • Umbrella organisationAll of Croatia

    Savez društava distrofičara Hrvatske (SDDH)

    National federation of local associations in Croatia for people with neuromuscular diseases, including ALS/MND and Duchenne muscular dystrophy; member of International Alliance of ALS/MND Associations and EAMDA.

    For ALS (motor neurone disease), Duchenne muscular dystrophy

    Visit site: sddh.hr
  • Umbrella organisationAll of Slovenia

    Združenje za redke bolezni Slovenije (ZRBS)

    ZRBS is a voluntary association of Slovenian patient societies for specific groups of rare diseases; it co-organises the national Rare Disease Day conference.

    For Glioblastoma, Acute myeloid leukemia, Childhood cancers and 34 more

    Visit site: zrbs.eu
  • Umbrella organisationAll of China

    蔻德罕见病中心

    Chinese Organization for Rare Disorders (CORD): national rare disease alliance in China supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: cord.org.cn
  • Umbrella organisationEurope

    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
  • Umbrella organisationEurope

    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
  • Umbrella organisationInternational

    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
  • Umbrella organisationEurope

    European Patients' Forum (EPF)

    Umbrella of European patient organisations and national patient coalitions.

    For any disease

    Visit site: eu-patient.eu
  • Umbrella organisationInternational

    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

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