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IPA Members & Contacts

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) – http://australianpompe.org.au/
  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 – 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. Spain: Asociación Española de Enfermos de Pompe (AEEP) – http://www.asociaciondepompe.org
  46. Switzerland: Selbsthilfegruppe M. Pompe Schweiz – www.mpompe.ch/
  47. Taiwan: Taiwan Foundation for Rare Disorders – www.tfrd.org.tw
  48. Thailand: Genetic LSD Foundation Thailand – www.lsdthailand.org
  49. Turkey: MPS LH Derneğι – www.mpsturk.com
  50. Ukraine: Kharkiv Charitable Foundation Children with spinal muscular atrophy – www.csma.org.ua
  51. United Kingdom: Association for Glycogen Storage Disease (UK) (AGSD-UK) – www.agsd.org.uk/
  52. United Kingdom: Pompe Support Network – www.pompe.uk
  53. United States: Acid Maltase Deficiency Association (AMDA) – http://amda-pompe.org/
  54. United States: United Pompe Foundation (UPF) – www.unitedpompe.com/
  55. Uruguay: Asociacion Uruguaya De Pacientes Con Enfermedades Lisosomales (AUPEL) – www.aupeluruguay.com