We're currently updating our list of members and contacts. Please send an e-mail to info@worldpompe.org for contact requests.
List of countries and patient organizations
Personal contact data are not displayed for privacy reasons.
- Algeria: Association Shifa des Maladies NeuroMusculaires (ASMNM) - http://shifadz.wix.com/asso
- Argentina: Asociación de Pacientes de Enfermedades Lisosomales de la Republica Argentina (APELRA) - http://web.apelra.org.ar
- Australia: Australian Pompe Association (APA) - http://australianpompe.org.au/
- Austria: Selbsthilfeorganisation Morbus Pompe Österreich - www.morbus-pompe.at/
- Belgium: Belgische Organisatie voor kinderen en volwassenen met een stofwisselingsziekte (BOKS) - www.boks.be
- Belgium: Vlaamse Vereniging Neuromusculaire Aandoeningen (NEMA) - www.nema.be
- Brasil: APMPS - Doencas Raras - www.apmps.org.br
- Bulgaria: National Alliance of People with Rare Diseases - www.rarebg.org
- Canada: Canadian Association of Pompe - www.pompecanada.com
- Chile: Fundación Chilena de Pacientes de Enfermedades Lisosomales (FELCH) - www.felch.cl
- Colombia: Asociación Colombiana de Pacientes con Enfermedades de Depósito Liposomal (ACOPEL) - www.acopel.org/web
- Croatia: Hrvatski Savez za rijetke bolesti - www.rijetke-bolesti.hr
- Czech Republic: Asociace muskulárních dystofikù v ÈR - www.amd-mda.cz
- Ecuador: Fundación Ecuatoriana de Pacientes con Enfermedades de Depósito Lisosomal (FEPEL DASHA) - www.fepeldasha.org
- France: Association Francophone Glycogenose (AFG) - www.glycogenoses.org
- Germany: Selbsthilfegruppe Glykogenose Deutschland e.V. - www.glykogenose.de
- Germany: Pompe Deutschland e.V. - www.mpompe.de
- Greece: Greek Lysosomal Diseases Association - http://greeklysosomal.blogspot.com/
- Hong Kong: Hong Kong Mucopolysaccharidoses & Rare Genetic Diseases Mutual Aid Group - www.hk-mps.com
- India: LSD Support Society (LSDSS) - www.lsdss.org
- India: Organisation for Rare Diseases India (ORDI) - http://ordindia.org/
- Italy: Associazione Italiana Glicogenosi (AIG) - www.aig-aig.it
- Japan: Pompe House - http://pompe-house.com
- Macedonia FYR: Association for citizens for rare diseases LIFE WITH CHALLENGES - http://challenges.mk/
- Malaysia: Malaysia Lysosomal Diseases Association - www.mymlda.com
- Mexico: Pide Un Deseo - http://iap.pideundeseo.org
- Netherlands: Spierziekten Nederland - www.spierziekten.nl
- New Zealand: New Zealand Pompe Network - https://nzpompenetwork.weebly.com/
- Norway: Foreningen for Muskelsyke - www.ffm.no
- Peru: Asociacion de Distrofia Muscular del Peru - http://admperu.cjb.net
- Philippines: Philippine Society for Orphan Disorders (PSOD) - www.psod.org.ph
- Poland: Rare Disease Organisation Poland - www.rzadkiechoroby.pl
- Portugal: Raríssimas - Associação Nacional de Deficiências Mentais e Raras - www.linharara.pt
- Portugal: Portuguese Association of Neuromuscular Diseases - http://apn.pt/apn
- Romania: Alianța Națională pentru Boli Rare din România - www.bolirareromania.ro
- Russia: Interregional Non-government charitable invalid organisation <union of patients with rare diseases and patients' organisations dealing with rare diseases> - www.spiporz.ru
- Russia: Russian Association for Rare Diseases (RARD) - www.rare-diseases.ru
- Serbia: National Organisation for Rare Diseases of Serbia (NORBS) - www.norbs.rs
- Singapore: Rare Disorders Society (Singapore) - www.rdss.org.sg
- Slovenia: Drustvo Distrofikov Slovenije - www.drustvo-distrofikov.si
- South Africa: Rare Disease Society of South Africa - http://rarediseases.co.za
- South Africa: Pompe South Africa - www.pompesa.co.za
- South Korea: Korea Pompe Disease Society (KPDS) - www.kpds.kr/
- Spain: Asociacion Espanola de Enfermos de Glucogenosis (AEEG) - www.glucogenosis.org
- Spain: Asociación Española de Enfermos de Pompe (AEEP) - http://www.asociaciondepompe.
org - Switzerland: Selbsthilfegruppe M. Pompe Schweiz - www.mpompe.ch/
- Taiwan: Taiwan Foundation for Rare Disorders - www.tfrd.org.tw
- Thailand: Genetic LSD Foundation Thailand - www.lsdthailand.org
- Turkey: MPS LH Derneğι - www.mpsturk.com
- Ukraine: Kharkiv Charitable Foundation Children with spinal muscular atrophy - www.csma.org.ua
- United Kingdom: Association for Glycogen Storage Disease (UK) (AGSD-UK) - www.agsd.org.uk/
- United Kingdom: Pompe Support Network - www.pompe.uk
- United States: Acid Maltase Deficiency Association (AMDA) - http://amda-pompe.org/
- United States: United Pompe Foundation (UPF) - www.unitedpompe.com/
- Uruguay: Asociacion Uruguaya De Pacientes Con Enfermedades Lisosomales (AUPEL) - www.aupeluruguay.com