Under construction – not a live service
Sign in

Support organisations

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

118 organisations for ALS (motor neurone disease) in all countries

  • Patient group

    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.org
  • Patient group

    ALS-Hilfe Bayern e.V.

    Munich-based association helping people with ALS and relatives in Bavaria, with patient and relatives meetings and help with aids.

    For ALS (motor neurone disease)

    Visit site: als-hilfe-bayern.de
  • Patient group

    ALS-Selbsthilfegruppe Region Stuttgart

    Online self-help group for people with ALS and their relatives in the Stuttgart region, offering exchange, support and practical tips via Zoom meetings.

    For ALS (motor neurone disease)

    Visit site: als-selbsthilfe-stuttgart.de
  • Patient group

    Chance zum Leben – ALS e.V.

    Association supporting people with ALS and their families, funding therapies and aids, raising awareness and offering an ALS guide flyer.

    For ALS (motor neurone disease)

    Visit site: chancezumleben-als.de
  • Patient group

    Les 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.org
  • Patient group

    Polskie Towarzystwo Chorób Nerwowo-Mięśniowych Oddział Regionalny w Łodzi

    Association of people with neuromuscular diseases, ALS (SLA) among them, offering home rehabilitation and information activities.

    For ALS (motor neurone disease)

    Visit site: miesnie.org.pl
  • Patient groupAll of Canada

    ALS Canada

    National charity working to change the reality for people living with ALS through support, advocacy and research investment.

    For ALS (motor neurone disease)

    Visit site: als.ca
  • Patient groupAll of India

    ALS Care and Support Foundation India (ALSCAS)

    ALS Care and Support Foundation India: foundation in India supporting people with ALS/MND and their families with information and support.

    For ALS (motor neurone disease)

    Visit site: alslifemanagement.weebly.com
  • Patient groupAll of Belgium

    ALS Liga België

    Patient association in Belgium for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: als.be
  • Patient groupAll of Malta

    ALS Malta Foundation

    Patient-founded Maltese foundation for people with ALS; runs the Dar Bjorn neurological home, raises awareness and funds ALS research.

    For ALS (motor neurone disease)

    Visit site: alsmalta.org
  • Patient groupAll of United States

    ALS 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.org
  • Patient groupAll of Netherlands

    ALS Patiëntenvereniging

    Patient association in the Netherlands for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: alspatientenvereniging.nl
  • Patient groupAll of Switzerland

    ALS Schweiz

    Patient association in Switzerland for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: als-schweiz.ch
  • Patient groupAll of United States

    ALS 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.org
  • Patient groupAll of United States

    ALS 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.org
  • Patient groupAll of Vietnam

    ALS Việt Nam

    ALS Vietnam: patient organisation in Vietnam supporting people with ALS/MND and their families with information and support.

    For ALS (motor neurone disease)

    Visit site: benhals.com
  • Patient groupAll of Germany

    ALS-Deutschland: Verbund der ALS-Vereine

    Nationwide federation of German ALS associations that gives people with ALS and relatives a voice and holds a monthly online meeting.

    For ALS (motor neurone disease)

    Visit site: als-deutschland.de
  • Patient groupAll of Türkiye

    ALS-MNH Derneği

    Patient association in Türkiye for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: als.org.tr
  • Patient groupAll of Germany

    ALS-mobil e.V.

    Association of people with ALS and relatives offering information, counselling, help with applications and aids, and meetups in Berlin, Potsdam and Leipzig.

    For ALS (motor neurone disease)

    Visit site: als-mobil.de
  • Patient groupAll of Mexico

    Apoyo Integral Gila A.C.

    Apoyo Integral Gila: charity in Mexico supporting people with ALS/MND and their families with information and support.

    For ALS (motor neurone disease)

    Visit site: ela.org.mx
  • Patient groupAll of France

    ARSLA - Association pour la recherche sur la SLA

    National association for ALS and other motor neuron diseases offering patient and carer information, support services, local teams and a magazine.

    For ALS (motor neurone disease)

    Visit site: arsla.org
  • Patient groupAll of India

    Asha Ek Hope Foundation for MND/ALS

    Asha Ek Hope Foundation for MND/ALS: foundation in India supporting people with ALS/MND and their families with information and support.

    For ALS (motor neurone disease)

    Visit site: ashaekhope.com
  • Patient groupAll of Colombia

    Asociación Colombiana de Esclerosis Lateral Amiotrófica

    Colombian ALS Association: patient organisation in Colombia supporting people with ALS/MND and their families with information and support.

    For ALS (motor neurone disease)

    Visit site: acelaweb.org
  • Patient groupAll of Argentina

    Asociación ELA Argentina

    ALS Association Argentina: patient organisation in Argentina supporting people with ALS/MND and their families with information and support.

    For ALS (motor neurone disease)

    Visit site: asociacionela.org.ar
  • Patient groupAll of Peru

    Asociación ELA Perú

    ALS Association Peru: patient organisation in Peru supporting people with ALS/MND and their families with information and support.

    For ALS (motor neurone disease)

    Visit site: elaperu.org
  • Patient groupAll of Spain

    Asociación ELA/EMN

    Patient association in Spain for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: elaemn.es
  • Patient groupAll of Spain

    Asociación Española de Esclerosis Lateral Amiotrófica (ADELA)

    Patient association in Spain for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: adelaweb.org
  • Patient groupAll of Brazil

    Associação Brasileira de Esclerose Lateral Amiotrófica (ABrELA)

    Brazilian ALS Association (ABrELA): patient organisation in Brazil supporting people with ALS/MND and their families with information and support.

    For ALS (motor neurone disease)

    Visit site: abrela.org.br
  • Patient groupAll of Portugal

    Associação Portuguesa de Esclerose Lateral Amiotrófica (APELA)

    Patient association in Portugal for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: apela.pt
  • Patient groupAll of Brazil

    Associação Pró-Cura da ELA

    Pro-Cure ALS Association: patient organisation in Brazil supporting people with ALS/MND and their families with information and support.

    For ALS (motor neurone disease)

    Visit site: procuradaela.org.br
  • Patient groupAll of Italy

    Associazione conSLAncio ETS

    Patient association in Italy for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: conslancio.it
  • Patient groupAll of Italy

    Associazione Italiana Sclerosi Laterale Amiotrofica (AISLA)

    Patient association in Italy for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: aisla.it
  • 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 Chile

    Corporación ELA Chile

    Chilean corporation for people with ALS, their carers and families, offering evaluation, guidance, equipment and a multidisciplinary centre.

    For ALS (motor neurone disease)

    Visit site: corporacionelachile.cl
  • 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

    Diagnose ALS was nun e.V.

    German association for people with ALS and their relatives, offering advice, support, information and brochures and books for patients, families and children.

    For ALS (motor neurone disease)

    Visit site: diagnose-als.de
  • 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

    Familiares y Amigos de Enfermos de la Neurona Motora A.C. (FYADENMAC)

    Families and Friends of Motor Neuron Disease Patients: patient organisation in Mexico supporting people with ALS/MND and their families with information and support.

    For ALS (motor neurone disease)

    Visit site: fyadenmac.org
  • Patient groupAll of Australia

    FightMND

    FightMND: charity in Australia supporting people with ALS/MND and their families with information and support.

    For ALS (motor neurone disease)

    Visit site: fightmnd.org.au
  • Patient groupAll of Serbia

    Fondacija Borba protiv ALS

    Foundation in Serbia for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: borbaprotivals.rs
  • Patient groupAll of Italy

    Fondazione Italiana di Ricerca per la Sclerosi Laterale Amiotrofica (AriSLA) – ETS

    Italian research foundation funding ALS research; member of the International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: arisla.org
  • 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 Ecuador

    Fundación Ecuatoriana de Esclerosis Múltiple (FUNDEM)

    Quito-based civil-society foundation for people with multiple sclerosis, ALS and other degenerative neurological diseases, offering specialised neurology care, therapy, social assistance and information.

    For Multiple sclerosis, ALS (motor neurone disease)

    Visit site: fundem.org.ec
  • Patient groupAll of Spain

    Fundación Española para el Fomento de la Investigación de la Esclerosis Lateral Amiotrófica (FUNDELA)

    Spanish foundation promoting ALS research and supporting people with ALS; member of the International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: fundela.es
  • Patient groupAll of Spain

    Fundación Luzón

    Foundation in Spain for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: ffluzon.org
  • Patient groupAll of Panama

    Fundación Pasión por Vivir

    Panamanian foundation accompanying people living with ALS and their families, with support for medicines, therapies, communication and carers.

    For ALS (motor neurone disease)

    Visit site: pasionporvivir.org
  • 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 Greece

    Hellenic ALS Association

    Patient association in Greece for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: alshellas.gr
  • Patient groupAll of United States

    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
  • Patient groupAll of Brazil

    Instituto Paulo Gontijo

    Paulo Gontijo Institute: charity in Brazil supporting people with ALS/MND and their families with information and support.

    For ALS (motor neurone disease)

    Visit site: ipg.org.br
  • 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 Ireland

    Irish Motor Neurone Disease Association

    Charity in Ireland for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: imnda.ie
  • Patient groupAll of Japan

    JALSA 日本ALS協会

    Japan ALS Association: patient organisation in Japan supporting people with ALS/MND and their families with information and support.

    For ALS (motor neurone disease)

    Visit site: alsjapan.org
  • Patient groupAll of Finland

    Lihastautiliitto ry

    National disability organisation for people with muscle diseases in Finland; offers peer support, courses, guides and ALS-specific events and exercise videos.

    For ALS (motor neurone disease)

    Visit site: lihastautiliitto.fi
  • 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 United Kingdom

    MND Association

    Charity in the United Kingdom for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: mndassociation.org
  • Patient groupAll of Iceland

    MND félag Íslands

    Patient association in Iceland for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: mnd.is
  • Patient groupAll of Malaysia

    MND Malaysia (Persatuan Penyakit Motor Neuron Malaysia)

    MND Malaysia: patient organisation in Malaysia supporting people with ALS/MND and their families with information and support.

    For ALS (motor neurone disease)

    Visit site: mndmalaysia.org
  • Patient groupAll of Australia

    MND Queensland

    MND Queensland: patient organisation in Australia supporting people with ALS/MND and their families with information and support.

    For ALS (motor neurone disease)

    Visit site: mndqld.org.au
  • Patient groupAll of United Kingdom

    MND Scotland

    Charity in the United Kingdom for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: mndscotland.org.uk
  • Patient groupAll of South Africa

    Motor Neurone Disease Association of South Africa

    Motor Neurone Disease Association of South Africa: patient organisation in South Africa supporting people with ALS/MND and their families with information and support.

    For ALS (motor neurone disease)

    Visit site: mndasouthafrica.org
  • Patient groupAll of Australia

    Motor Neurone Disease Association of Western Australia (MNDAWA)

    MND Association of Western Australia: patient organisation in Australia supporting people with ALS/MND and their families with information and support.

    For ALS (motor neurone disease)

    Visit site: mndawa.asn.au
  • Patient groupAll of Singapore

    Motor Neurone Disease Association Singapore (MNDa)

    Motor Neurone Disease Association Singapore: patient organisation in Singapore supporting people with ALS/MND and their families with information and support.

    For ALS (motor neurone disease)

    Visit site: mnda.org.sg
  • Patient groupAll of New Zealand

    Motor Neurone Disease New Zealand

    Motor Neurone Disease New Zealand: patient organisation in New Zealand supporting people with ALS/MND and their families with information and support.

    For ALS (motor neurone disease)

    Visit site: mnd.org.nz
  • 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 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 United Kingdom

    My Name’5 Doddie Foundation

    Charity in the United Kingdom for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: myname5doddie.co.uk
  • 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 Canada

    SLA Québec

    ALS Society of Quebec supporting people affected by amyotrophic lateral sclerosis and their families.

    For ALS (motor neurone disease)

    Visit site: sla-quebec.ca
  • Patient groupAll of Netherlands

    Stichting ALS Nederland

    Foundation in the Netherlands for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: als.nl
  • Patient groupAll of Netherlands

    Stichting Patiënten voor Patiënten

    Foundation in the Netherlands for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: stichtingpvp.nl
  • Patient groupAll of Norway

    Stiftelsen ALS Norge

    Foundation in Norway for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: alsnorge.no
  • Patient groupAll of Poland

    Stowarzyszenie Dignitas Dolentium

    Association founded by ALS/MND patients and their families that helps people with ALS, with an equipment loan service, a trust line and publications.

    For ALS (motor neurone disease)

    Visit site: mnd.pl
  • Patient groupAll of Uruguay

    Tenemos ELA Uruguay

    Non-profit of people affected by ALS, their families and friends in Uruguay, aiming to improve quality of life for patients, families and carers.

    For ALS (motor neurone disease)

    Visit site: tenemosela.org.uy
  • 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 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 Bosnia & Herzegovina

    Udruženje oboljelih od ALS Republike Srpske

    Patient association in Bosnia and Herzegovina for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: udruzenjeals.org
  • Patient groupAll of Italy

    Viva La Vita Italia

    Patient association in Italy for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: vivalavitaitalia.org
  • Patient groupAll of Luxembourg

    Wäertvollt Liewen

    Patient association in Luxembourg for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: waertvollt-liewen.lu
  • Patient groupAll of Russia

    Благотворительный фонд помощи больным БАС имени Нины Левицкой

    Charity in Russia for people with ALS/MND and their families; member of International Alliance of ALS/MND Associations.

    For ALS (motor neurone disease)

    Visit site: alsportal.ru
  • Patient groupAll of Israel

    ישראלס IsrALS – העמותה לחקר ה-ALS בישראל

    IsrALS – Israeli ALS Research Association: charity in Israel supporting people with ALS/MND and their families with information and support.

    For ALS (motor neurone disease)

    Visit site: israls.org.il
  • 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

    北京东方丝雨渐冻人罕见病关爱中心

    Beijing-based charity for people with ALS/MND and their families, offering ventilator subsidies, care kits, home-care training, patient forums and disease information.

    For ALS (motor neurone disease)

    Visit site: jiandongren.org
  • 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 Australia

    MND Australia

    MND Australia: national umbrella body in Australia for people affected by ALS/MND; information, support and service linkage.

    For ALS (motor neurone disease)

    Visit site: mndaustralia.org.au
  • 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 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
  • 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

    International 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.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

Do you know an organisation we missed? Write to support@frontlightresearch.com and we will add it.