Association for Glycogen Storage Disease UK - Pompe Pages

Old Hambledon Racecourse
Sheardley Lane
Droxford
Hampshire
SO32 3QY

Tel (Office Hours): 0300 123 2790 Tel (Out-of-Office Hours): 0300 123 2799
Web: www.pompe.org.uk

The Association for Glycogen Storage Disease UK's Pompe Pages 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. They offer an opportunity to contact other families and individuals, can put those interested in touch with other members of the group in their locality and provide research news. They have the following publications on their website:
  • Pompe's Diseases Guides a beginner's guide to Pompe's disease which assumes no previous scientific or medical knowledge.
  • The Pompe Bulletin published once a year at present. It is written with UK patients in mind but much of the information may be of general interest.
There is also a Family Support Officer (a clinical nurse specialist based at the Royal Manchester Children's Hospital). The Family Support Officer is able to meet with patients during visits to Pompe clinics and during infusions at the LSD expert centres. Where patients are unable to travel, the Family Support Officer will make home visits to ensure that the highest level of care is available to all UK Pompe folk.

Last updated on 21/07/2012