IPA Members & Contacts

Please Contact us if your Pompe patient organization would like to be an IPA member, or if you need to contact us for any other reason.

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 – 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) – ordindia.org
22. Italy: Associazione Italiana Glicogenosi (AIGlico) – www.aiglico.it
23. Japan: Pompe House – pompe-family.com
24. Macedonia FYR: Association for citizens for rare diseases LIFE WITH CHALLENGES – challenges.mk
25. Malaysia: Malaysia Lysosomal Diseases Association – www.mymlda.com
26. Mexico: Pide Un Deseo – iap.pideundeseo.org
27. Netherlands: Spierziekten Nederland – www.spierziekten.nl
28. New Zealand: New Zealand Pompe Network – https://www.nzpompe.network
29. Norway: Foreningen for Muskelsyke – www.ffm.no
30. Peru: Asociacion de Distrofia Muscular del Peru – 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