Directory of associations
Global federation of over 50 Pompe patient organizations worldwide. Coordinates activities and shares knowledge among national groups.
Leading organization in Spain for patients with glycogen storage diseases, including Pompe disease.
Spanish association formed by patients, families and healthcare professionals dedicated exclusively to Pompe disease.
French-speaking association supporting patients with glycogen storage diseases, including Pompe.
French association bringing together patients and families affected by 60 lysosomal diseases, including Pompe. Funds research and promotes access to treatments.
German self-help group for patients with glycogen storage diseases, including Pompe disease.
German self-help association founded in 2016 specifically for German-speaking people affected by Pompe disease.
Dutch muscle disease association with a dedicated group for Pompe disease.
Italian association founded in 1996 supporting families affected by glycogen storage diseases, including Pompe. IPA member.
British charity founded in 1985 providing information and support to people with glycogen storage diseases, including Pompe.
British community network of patients, families, scientists and healthcare professionals dedicated to improving life for people with Pompe.
Austrian self-help group founded in 2008 by families affected by Pompe disease. Supports patients across Austria.
Swiss self-help group for Pompe disease patients, with information in German, French and Italian.
Belgian umbrella organization for rare metabolic diseases, including lysosomal diseases such as Pompe.
Portuguese association founded in 2002 supporting patients with rare diseases, including Pompe. Operates the Linha Rara helpline and rehabilitation centers.
Norwegian neuromuscular disease association representing patients with various myopathies, including Pompe disease.
Greek association founded in 1997 representing patients with lysosomal diseases, including Pompe, Gaucher and Fabry.
Croatian rare disease alliance bringing together over 36 organizations and 1,000 individual members affected by rare diseases, including Pompe.
US organization founded in 1995 dedicated to supporting Pompe disease patients, funding research and raising public awareness.
US foundation assisting Pompe patients and their families with medical costs and needs not covered by insurance.
US organization founded in 1979 supporting patients with glycogen storage diseases, including Pompe (type II).
Canadian association representing Pompe disease patients and families of all ages across Canada.
Brazilian lysosomal disease association providing support to Pompe disease patients.
Brazilian association of relatives, friends and Pompe patients, founded in 2005. Promotes early diagnosis and access to treatment.
Argentinian organization founded in 2000 supporting families and patients with lysosomal diseases such as Pompe, Gaucher and Fabry.
Colombian organization founded in 1997 supporting patients with lysosomal diseases, including Pompe. Works on public policy and treatment access.
Mexican non-profit organization supporting patients with lysosomal diseases, including Pompe. IPA member in Mexico.
Chilean foundation created in 2000 supporting patients with lysosomal diseases. Has assisted over 450 people and promoted the Ricarte Soto Law.
Ecuadorian foundation established in 2011 supporting patients with lysosomal diseases. Achieved approval of Law 67 on Rare Diseases in Ecuador.
Uruguayan association bringing together patients, families and people interested in lysosomal diseases. ULAPA member.
Taiwanese Pompe disease patient association. Taiwan is a world leader in newborn screening for Pompe.
Taiwanese foundation established in 1999 advocating for rare disease patients in medication, education and employment. Supports Pompe patients.
First lysosomal disease patient organization in India, founded in 2010. Promotes early diagnosis and supports families affected by Pompe.
National umbrella organization for rare diseases in India, founded in 2014. Operates a telephone helpline and connects patients with specialists.
Malaysian association advocating for the rights of lysosomal disease patients, including Pompe, and educating the public about these conditions.
Singaporean society founded by families with lysosomal diseases in 2011. Only organization in Singapore dedicated exclusively to rare diseases.
Philippine organization founded in 2006 serving as a support group for people with rare diseases, including lysosomal diseases such as Pompe.
Thai foundation established in 2009 supporting lysosomal disease patients. Advocates with the government for rare disease treatment access.
Hong Kong mutual aid group founded in 1999 for MPS and rare genetic disease patients, including Pompe and other lysosomal diseases.
South African rare disease society representing the interests of patients with rare conditions, including lysosomal diseases such as Pompe.
Algerian neuromuscular disease association supporting patients with rare myopathies, including Pompe. National voice from Algiers province for 40 provinces.
Turkish association for MPS and lysosomal disease patients, including Pompe. IPA member and collaborates in genetic research.
Australian association founded in 1997 supporting over 80 Pompe patients and their families. Advocates for Pompe inclusion in the national newborn screening program.
New Zealand network created by people with Pompe for people with Pompe, their families and caregivers.