IPA
- The International Pompe Association. Works with Pompe’s Patients’ Organisations world-wide.
AMDA
- The American Acid Maltase Deficiency Association.
AGSD
- Association for Glycogen Storage Disease- UK.
VSN
- Vereniging Spierziekten Nederland. The Dutch Neuromuscular Association.
CAP
- Canadian Association of Pompe
Pompe Centre
- Rotterdam, Netherlands
A Guide For Families
- An interesting and easy-to-read article, written by Kevin O’Donnell.
The Pompe’s Pages
- UK
Genzyme’s Pompe’s Page
.
Genzyme Aust
ralia
Brochure:
A Physician’s Guide To Pompe Disease
Brochure:
Pompe Connections
Brochure:
Flying with a Ventilator in the USA
Information on
Clinical Trials
Looking for
a Pompe’s Group in your country
?
GSDNet
: An Internet Mailing List for all Glycogen Storage Diseases.
Links to Information on Other Sites
