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Support organisations

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

74 organisations for Pompe disease in all countries

  • Patient groupAll of United States

    Acid Maltase Deficiency Association

    US nonprofit (AMDA) supporting people with Pompe disease (acid maltase deficiency) and their families, and promoting research.

    For Pompe disease

    Visit site: amda-pompe.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 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 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 Spain

    Asociación Española de Enfermos de Glucogenosis (AEEG)

    Patient organisation for people with glycogen storage diseases, including Pompe disease in Spain; member of the International Pompe Association (IPA).

    For Pompe disease

    Visit site: glucogenosis.org
  • Patient groupAll of Spain

    Asociación Española de Enfermos de Pompe (AEEP)

    Patient organisation for people with Pompe disease in Spain; member of the International Pompe Association (IPA).

    For Pompe disease

    Visit site: asociaciondepompe.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 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 Portugal

    Associação Portuguesa de Doentes Neuromusculares (APN)

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

    For Spinal muscular atrophy, Pompe disease

    Visit site: apn.pt
  • Patient groupAll of United Kingdom

    Association for Glycogen Storage Disease (UK) (AGSD-UK)

    Charity for people with glycogen storage diseases, including Pompe disease in the United Kingdom; member of the International Pompe Association (IPA).

    For Pompe disease

    Visit site: agsd.org.uk
  • Patient groupAll of France

    Association Francophone des Glycogénoses (AFG)

    Patient organisation for people with glycogen storage diseases, including Pompe disease in France; member of the International Pompe Association (IPA).

    For Pompe disease

    Visit site: glycogenoses.org
  • Patient groupAll of Italy

    Associazione Italiana Glicogenosi (AIGlico)

    Patient organisation for people with glycogen storage diseases, including Pompe disease in Italy; member of the International Pompe Association (IPA).

    For Pompe disease

    Visit site: aiglico.it
  • 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 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 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 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 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 New Zealand

    New Zealand Pompe Network

    New Zealand Pompe Network: patient organisation in New Zealand supporting people with Pompe disease; member of IPA.

    For Pompe disease

    Visit site: nzpompe.network
  • Patient groupAll of Germany

    Pompe Deutschland e.V.

    Patient organisation for people with Pompe disease in Germany; member of the International Pompe Association (IPA).

    For Pompe disease

    Visit site: mpompe.de
  • Patient groupAll of United Kingdom

    Pompe Support Network

    Patient organisation for people with Pompe disease in the United Kingdom; member of the International Pompe Association (IPA).

    For Pompe disease

    Visit site: pompe.uk
  • Patient groupAll of Denmark

    Pompeforeningen i Danmark

    Danish patient association for people with Pompe disease and their families.

    For Pompe disease

    Visit site: pompeforeningen.dk
  • 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 Germany

    Selbsthilfegruppe Glykogenose Deutschland e.V.

    Patient organisation for people with glycogen storage diseases, including Pompe disease in Germany; member of the International Pompe Association (IPA).

    For Pompe disease

    Visit site: glykogenose.de
  • Patient groupAll of Switzerland

    Selbsthilfegruppe M. Pompe Schweiz

    Patient organisation for people with Pompe disease in Switzerland; member of the International Pompe Association (IPA).

    For Pompe disease

    Visit site: mpompe.ch
  • Patient groupAll of Austria

    Selbsthilfeorganisation Morbus Pompe Österreich

    Patient organisation for people with Pompe disease in Austria; member of the International Pompe Association (IPA).

    For Pompe disease

    Visit site: morbus-pompe.at
  • 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 Netherlands

    Spierziekten Nederland

    Dutch patient association for people with neuromuscular diseases, including myasthenia gravis, SMA and CIDP; member of EuMGA and SMA Europe, listed by GBS|CIDP Foundation.

    For Myasthenia gravis, Spinal muscular atrophy, CIDP (chronic inflammatory demyelinating polyneuropathy) and 1 more

    Visit site: spierziekten.nl
  • 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 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 Ukraine

    Діти з СМА

    Charity in Ukraine for people with spinal muscular atrophy (SMA) and their families; member of SMA Europe.

    For Spinal muscular atrophy, Pompe disease

    Visit site: csma.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 Japan

    全国ポンペ病患者と家族の会

    Pompe House – National Association of Pompe Disease Patients and Families: patient organisation in Japan supporting people with Pompe disease; member of IPA.

    For Pompe disease

    Visit site: pompe-family.com
  • 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 Russia

    Союз пациентов и пациентских организаций по редким заболеваниям

    Russian union of patients and patient organisations for rare diseases; listed as the Russian contact by the International Pompe Association (IPA).

    For Pompe disease

    Visit site: spiporz.ru
  • 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

    International 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
  • 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.