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Pompe Links

Pompe Organizations

Please refer also to the list of IPA Affiliates for national Pompe organizations.
Display # 
# Web Link
1 International Pompe Association (IPA)
We're the makers of this website. Please click the link to contact us.
2 EURORDIS - The Voice of Rare Disease Patients in Europe
The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases. Eurordis' mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and - directly or indirectly - to fight against the impact of rare diseases on their lives.
3 The Pompe Center at Erasmus
They are organising a Patient Registry in collaboration with the IPA.
4 United Pompe Foundation
The United Pompe Foundation was formed to assist patients and/or their families with medical costs and other expenses that these patients and families face and may not be able to cover, or fully cover, through their insurance.
E-mail: david@unitedpompe.com
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Featured Link

Glycogen Storage Disease Network (GSDnet)

GSDNet is an unmoderated discussion list for all types of glycogen storage disease (GSD). The list is intended to be a resource and support network for individuals and families affected by one of the 11 types of GSD. Participation by medical and scientific professionals, and other relevant parties, is also encouraged.

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International Pompe Association
Contact: IPA secretariat, Paula Waddell, c/o VSN, Luitenant Generaal van Heutszlaan 6, 3743 JN Baarn, The Netherlands
Phone +31(35)5480480, Fax +31(35)5480499, E-mail info@worldpompe.org
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