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 – 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