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Pompe's Group of the Association for Glycogen Storage Disease
2 Summerside PlaceEdinburgh
EH6 4PA
Tel: 0131 554 2791
Web: www.pompe.org.uk
Best time to telephone: normal working hours
The Pompe's Group provides information about Pompe's Disease (acid maltase deficiency, glycogen storage disease type II) to affected families and individuals but it may also be of use to medical and scientific students and professionals. The group also offers opportunity to contact other families and individuals and can put those interested in touch with other members of the group in their locality. The group provides research news and includes the following publications on its website.
- Pompe's Disease - a Guide for Families. A beginner's guide to Pompe's disease which assumes no previous scientific or medical knowledge.
- The Pompe's Bulletin. This is the newsletter of the Pompe's Group, published once a year at present. It is written with UK patients in mind but much of the information may be of general interest.
- Caring for a child with Pompe's. This is a pamphlet which deals with practical aspects of caring for a baby with infantile Pompe's.
Checked: July 2006
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