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 MC
Information for patients, scientists, clinicians, genetic counsellors and others with special interest in Pompe disease.

Erasmus MC is home of one of the leading Pompe teams in the world.
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.
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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.


Your feedback is highly appreciated.
It's easy: Submit a request or send an e-mail to the IPA
(see bottom of page).