Links
You will find links below to the various Pompe related web sites available. If you know of any Pompe related web site that you'd like to add to the list. Please email the IPA webmaster.
Pompe Organizations
Glycogen Storage Disease Network (GSDnet)
http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?LIST=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.
Selbsthilfegruppe Glykogenose Deutschland e. V.
German association for patients suffering from all types of glykogen storage disorders, including Pompe disease. The site is in German.
The Pompe Center at Erasmus
They are organising a Patient Registry in collaboration with the IPA.
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.
AMDA
The Acid Maltase Deficiency Association, A M D A, was formed to assist in funding research and to promote public awareness of Acid Maltase Deficiency, also known as Pompe’s Disease.
AGSD-UK
The AGSD-UK Pompe group is a small group of volunteers taken from the UK Pompe community including patients and family members. We meet regularly with Biotech Industry representatives, the Department of Health officials, other LSD charities and leading UK Pompe Physicians.
© International Pompe Association
Secretariat (NL): +31 35 5480461