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.

77 organisations for Fabry disease in all countries

  • Patient groupAll of Italy

    AIAF – Associazione Italiana Anderson-Fabry

    Patient organisation for people with Fabry disease in Italy; member of the Fabry International Network (FIN).

    For Fabry disease

    Visit site: aiaf-malattiadifabry.org
  • Patient groupAll of Guatemala

    ANGEL - Asociación Nacional Guatemalteca para las Enfermedades Lisosomales

    National association of patients, families and professionals for lysosomal and low-prevalence diseases in Guatemala, with an information page on Fabry disease.

    For Fabry disease, Gaucher disease, Pompe disease

    Visit site: angel-lisosomal.org
  • Patient groupAll of Colombia

    Asociación Colombiana de Pacientes con Enfermedades de Depósito Lisosomal (ACOPEL)

    Asociación Colombiana de Pacientes con Enfermedades de Depósito Lisosomal (ACOPEL): patient organisation in Colombia supporting people with Fabry disease, Gaucher disease, Pompe disease; member of IPA, FIN.

    For Fabry disease, Gaucher disease, Pompe disease

    Visit site: acopel.org.co
  • Patient groupAll of Peru

    Asociación de Pacientes con Enfermedades Lisosomales del Perú (APPEL)

    Asociación de Pacientes con Enfermedades Lisosomales del Perú (APPEL): patient organisation in Peru supporting people with Fabry disease, Gaucher disease; member of FIN.

    For Fabry disease, Gaucher disease

    Visit site: appelperu.org
  • Patient groupAll of Spain

    Asociación MPS-Lisosomales España

    Spanish association for people with MPS and other lysosomal diseases, including Fabry, Gaucher and Pompe disease; listed by IGA and FIN.

    For Fabry disease, Gaucher disease, Pompe disease

    Visit site: mpslisosomales.org
  • Patient groupAll of Romania

    Asociația Pacienților cu Boala Fabry din România (APBFR)

    Patient organisation for people with Fabry disease in Romania; member of the Fabry International Network (FIN).

    For Fabry disease

    Visit site: fabryromania.ro
  • Patient groupAll of Portugal

    Associação Portuguesa de Doenças do Lisossoma (APL)

    Portuguese association for lysosomal diseases, including Fabry, Gaucher and Pompe disease; listed by FIN and IGA.

    For Fabry disease, Gaucher disease, Pompe disease

    Visit site: aplisosoma.org
  • Patient groupAll of France

    Association des Patients de la Maladie de Fabry (APMF)

    Patient organisation for people with Fabry disease in France; member of the Fabry International Network (FIN).

    For Fabry disease

    Visit site: apmf-fabry.org
  • Patient groupAll of Belgium

    BOKS vzw – Belgische Organisatie voor Kinderen en volwassenen met een Stofwisselingsziekte

    Belgian patient organisation for children and adults with metabolic diseases, including Fabry, Gaucher and Pompe disease; listed by FIN, IGA and IPA.

    For Fabry disease, Gaucher disease, Pompe disease

    Visit site: boks.be
  • Patient groupAll of Canada

    Canadian Fabry Association

    Association supporting people with Fabry disease and encouraging research into its causes, treatment and management.

    For Fabry disease

    Visit site: fabrycanada.com
  • 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 Peru

    Esperantra

    Esperantra: patient organisation in Peru supporting people with rare diseases; member of RDI.

    For Acute myeloid leukemia, Amyloidosis, Childhood cancers and 6 more

    Visit site: esperantra.org
  • Patient groupAll of Australia

    Fabry Australia

    Fabry Australia: patient organisation in Australia supporting people with Fabry disease; member of FIN.

    For Fabry disease

    Visit site: fabry.com.au
  • Patient groupAll of Norway

    Fabry Foreningen Norge

    Patient organisation for people with Fabry disease in Norway; member of the Fabry International Network (FIN).

    For Fabry disease

    Visit site: fabry.no
  • Patient groupAll of South Korea

    Fabry Korea

    Fabry Korea: patient organisation in South Korea supporting people with Fabry disease; member of FIN.

    For Fabry disease

    Visit site: fabrykorea.com
  • Patient groupAll of Denmark

    Fabry Patientforening Danmark

    Patient organisation for people with Fabry disease in Denmark; member of the Fabry International Network (FIN).

    For Fabry disease

    Visit site: fabry.dk
  • Patient groupAll of Netherlands

    Fabry Support & Informatie Groep Nederland (FSIGN)

    Patient organisation for people with Fabry disease in the Netherlands; member of the Fabry International Network (FIN).

    For Fabry disease

    Visit site: fabry.nl
  • Patient groupAll of United States

    Fabry Support & Information Group

    US nonprofit providing resources, community support and events for people and families affected by Fabry disease.

    For Fabry disease

    Visit site: fabry.org
  • Patient groupAll of Hungary

    Fabry-betegekért Alapítvány

    Foundation for people with Fabry disease in Hungary; member of the Fabry International Network (FIN).

    For Fabry disease

    Visit site: fabryalapitvany.hu
  • Patient groupAll of Sweden

    Fabryföreningen i Sverige

    Patient organisation for people with Fabry disease in Sweden; member of the Fabry International Network (FIN).

    For Fabry disease

    Visit site: fabry.se
  • Patient groupAll of Switzerland

    Fabrysuisse

    Patient organisation for people with Fabry disease in Switzerland; member of the Fabry International Network (FIN).

    For Fabry disease

    Visit site: fabrysuisse.ch
  • 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 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 Australia

    Genetic Support Network of Victoria

    Genetic Support Network of Victoria: patient organisation in Australia supporting people with rare diseases; member of RDI.

    For Cystic fibrosis, Fabry disease, Friedreich ataxia and 11 more

    Visit site: gsnv.org.au
  • 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 India

    LSD Support Society (LSDSS)

    LSD Support Society (LSDSS): patient organisation in India supporting people with Fabry disease, Gaucher disease, Pompe disease; member of IPA, FIN.

    For Fabry disease, Gaucher disease, Pompe disease

    Visit site: lsdssindia.org
  • Patient groupAll of Malaysia

    Malaysia Lysosomal Diseases Association (MLDA)

    Malaysia Lysosomal Diseases Association (MLDA): patient organisation in Malaysia supporting people with Fabry disease, Gaucher disease, Pompe disease; member of IPA, FIN.

    For Fabry disease, Gaucher disease, Pompe disease

    Visit site: mymlda.com
  • 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 Germany

    Morbus Fabry Selbsthilfegruppe e.V.

    Patient organisation for people with Fabry disease in Germany; member of the Fabry International Network (FIN).

    For Fabry disease

    Visit site: fabry-shg.org
  • Patient groupAll of Austria

    Morbus Fabry Selbsthilfegruppe Österreich

    Patient organisation for people with Fabry disease in Austria; member of the Fabry International Network (FIN).

    For Fabry disease

    Visit site: morbus-fabry.eu
  • Patient groupAll of Türkiye

    MPS LH Derneği – Mukopolisakkaridoz ve Benzeri Lizozomal Depo Hastalıkları Derneği

    Turkish association for MPS and related lysosomal storage diseases, including Fabry, Gaucher and Pompe disease; listed by FIN, IGA and IPA.

    For Fabry disease, Gaucher disease, Pompe disease

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

    MPS Society

    UK charity supporting people with MPS and related lysosomal diseases, including Fabry disease; member of the Fabry International Network (FIN).

    For Fabry disease

    Visit site: mpssociety.org.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 Singapore

    Rare Disorders Society (Singapore)

    Rare Disorders Society (Singapore): patient organisation in Singapore supporting people with Fabry disease, Pompe disease; member of IPA, FIN.

    For Fabry disease, Pompe disease

    Visit site: rdss.org.sg
  • 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 Czechia

    Sdružení META – spolek pacientů se střádavými onemocněními

    Czech association of patients with storage diseases, including Fabry, Gaucher and Pompe disease; listed by FIN and IGA.

    For Fabry disease, Gaucher disease, Pompe disease

    Visit site: sdruzenimeta.cz
  • 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 Poland

    Stowarzyszenie Rodzin z Chorobą Fabry’ego

    Patient organisation for people with Fabry disease in Poland; member of the Fabry International Network (FIN).

    For Fabry disease

    Visit site: fabry.org.pl
  • Patient groupAll of Finland

    Suomen Fabry-yhdistys

    Patient organisation for people with Fabry disease in Finland; member of the Fabry International Network (FIN).

    For Fabry disease

    Visit site: fabry.neuroliitto.fi
  • 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 France

    Vaincre les Maladies Lysosomales (VML)

    French association for people with lysosomal diseases, including Gaucher, Fabry and Pompe disease; member of the International Gaucher Alliance (IGA).

    For Fabry disease, Gaucher disease, Pompe disease

    Visit site: vml-asso.org
  • Patient groupAll of Slovakia

    ZOGO – Združenie ojedinelých genetických ochorení

    Slovak association of people with rare genetic diseases, including Fabry and Gaucher disease; listed by FIN and IGA.

    For Fabry disease, Gaucher disease

    Visit site: zogo.sk
  • Patient groupAll of Cyprus

    Ασπίδα Ζωής – Σύνδεσμος Ασθενών με Κληρονομικά Μεταβολικά Νοσήματα

    Cypriot association of patients with inherited metabolic diseases, including Fabry disease; member of the Fabry International Network (FIN).

    For Fabry disease

    Visit site: aspidazois.com
  • Patient groupAll of Greece

    Πανελλήνιος Σύλλογος Ασθενών και Φίλων με Λυσοσωμικά Νοσήματα «Η Αλληλεγγύη»

    Panhellenic association of patients with lysosomal diseases, including Fabry, Gaucher and Pompe disease; listed by FIN, IGA and IPA.

    For Fabry disease, Gaucher disease, Pompe disease

    Visit site: greeklysosomal.gr
  • Patient groupAll of Russia

    Дорога к жизни (Уфа)

    Patient organisation for people with Fabry disease in Russia; member of the Fabry International Network (FIN).

    For Fabry disease

    Visit site: ufafabry.ru
  • 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 Japan

    一般社団法人 全国ファブリー病患者と家族の会（ふくろうの会）

    Fabry NET – Japan Fabry Disease Patients and Families Association: patient organisation in Japan supporting people with Fabry disease; member of FIN.

    For Fabry disease

    Visit site: fabrynet.jp
  • 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
  • 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 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

    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

    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
  • 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.