Pompe Group

Association for Glycogen Storage Disease UK

c/o Allan Muir
Cobwebs
43a North Lane
Buriton
Petersfield
Hampshire
GU31 5RS

Tel: 01730 231 554
Web: www.pompe.org.uk
Best time to telephone: normal working hours

The Pompe 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 Bulletin. This is the newsletter of the Pompe 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.

The Pompe Group also has a Family Support Officer (a clinical nurse specialist based at the Royal Manchester Children's Hospital). This is a new post and the job description will evolve with time. It is hoped that the Family Support Officer will be 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.