International Pompe Association

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.

  1. Algeria: Association Shifa des Maladies NeuroMusculaires (ASMNM) - http://shifadz.wix.com/asso
  2. Argentina: Asociación de Pacientes de Enfermedades Lisosomales de la Republica Argentina (APELRA) - http://web.apelra.org.ar
  3. Australia: Australian Pompe Association (APA) - www.australianpompe.com
  4. Austria: Selbsthilfeorganisation Morbus Pompe Österreich - www.morbus-pompe.at/
  5. Belgium: Belgische Organisatie voor kinderen en volwassenen met een stofwisselingsziekte (BOKS) - www.boks.be
  6. Belgium: Vlaamse Vereniging Neuromusculaire Aandoeningen (NEMA) - www.nema.be
  7. Brasil: APMPS - Doencas Raras - www.apmps.org.br
  8. Bulgaria: National Alliance of People with Rare Diseases - www.rarebg.org
  9. Canada: Canadian Association of Pompe - www.pompecanada.com
  10. Chile: Fundación Chilena de Pacientes de Enfermedades Lisosomales (FELCH) - www.felch.cl
  11. Colombia: Asociación Colombiana de Pacientes con Enfermedades de Depósito Liposomal (ACOPEL) - www.acopel.org/web
  12. Croatia: Hrvatski Savez za rijetke bolesti - www.rijetke-bolesti.hr
  13. Czech Republic: Asociace muskulárních dystofikù v ÈR - www.amd-mda.cz
  14. Ecuador: Fundación Ecuatoriana de Pacientes con Enfermedades de Depósito Lisosomal (FEPEL DASHA) - www.fepeldasha.org
  15. France: Association Francophone Glycogenose (AFG) - www.glycogenoses.org
  16. Germany: Selbsthilfegruppe Glykogenose Deutschland e.V. - www.glykogenose.de
  17. Germany: Pompe Deutschland e.V. - www.mpompe.de
  18. Greece: Greek Lysosomal Diseases Association - http://greeklysosomal.blogspot.com/
  19. Hong Kong: Hong Kong Mucopolysaccharidoses & Rare Genetic Diseases Mutual Aid Group - www.hk-mps.com
  20. India: LSD Support Society (LSDSS) - www.lsdss.org
  21. India: Organisation for Rare Diseases India (ORDI) - http://ordindia.org/
  22. Italy: Associazione Italiana Glicogenosi (AIG) - www.aig-aig.it
  23. Japan: Pompe House - http://pompe-house.com
  24. Macedonia FYR: Association for citizens for rare diseases LIFE WITH CHALLENGES - http://challenges.mk/
  25. Malaysia: Malaysia Lysosomal Diseases Association - www.mymlda.com
  26. Mexico: Pide Un Deseo - http://iap.pideundeseo.org
  27. Netherlands: Spierziekten Nederland - www.spierziekten.nl
  28. New Zealand: New Zealand Pompe Network - https://nzpompenetwork.weebly.com/
  29. Norway: Foreningen for Muskelsyke - www.ffm.no
  30. Peru: Asociacion de Distrofia Muscular del Peru - http://admperu.cjb.net
  31. Philippines: Philippine Society for Orphan Disorders (PSOD) - www.psod.org.ph
  32. Poland: Rare Disease Organisation Poland - www.rzadkiechoroby.pl
  33. Portugal: Raríssimas - Associação Nacional de Deficiências Mentais e Raras - www.linharara.pt
  34. Portugal: Portuguese Association of Neuromuscular Diseases - http://apn.pt/apn
  35. Romania: Alianța Națională pentru Boli Rare din România - www.bolirareromania.ro
  36. Russia: Interregional Non-government charitable invalid organisation <union of patients with rare diseases and patients' organisations dealing with rare diseases> - www.spiporz.ru
  37. Russia: Russian Association for Rare Diseases (RARD) - www.rare-diseases.ru
  38. Serbia: National Organisation for Rare Diseases of Serbia (NORBS) - www.norbs.rs
  39. Singapore: Rare Disorders Society (Singapore) - www.rdss.org.sg
  40. Slovenia: Drustvo Distrofikov Slovenije - www.drustvo-distrofikov.si
  41. South Africa: Rare Disease Society of South Africa - http://rarediseases.co.za
  42. South Africa: Pompe South Africa - www.pompesa.co.za
  43. South Korea: Korea Pompe Disease Society (KPDS) - www.kpds.kr/
  44. Spain: Asociacion Espanola de Enfermos de Glucogenosis (AEEG) - www.glucogenosis.org
  45. Switzerland: Selbsthilfegruppe M. Pompe Schweiz - www.mpompe.ch/
  46. Taiwan: Taiwan Foundation for Rare Disorders - www.tfrd.org.tw
  47. Thailand: Genetic LSD Foundation Thailand - www.lsdthailand.org
  48. Turkey: MPS LH Derneğι - www.mpsturk.com
  49. Ukraine: Kharkiv Charitable Foundation Children with spinal muscular atrophy - www.csma.org.ua
  50. United Kingdom: Association for Glycogen Storage Disease (UK) (AGSD-UK) - www.agsd.org.uk/
  51. United States: Acid Maltase Deficiency Association (AMDA) - http://amda-pompe.org/
  52. United States: United Pompe Foundation (UPF) - www.unitedpompe.com/
  53. Uruguay: Asociacion Uruguaya De Pacientes Con Enfermedades Lisosomales (AUPEL) - www.aupeluruguay.com