Willink Unit, Genetic Medicine 6th Floor
St Mary's Hospital
Tel: 0161 701 2601
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.
There is also a Family Support Officer (a clinical nurse specialist based at the Royal Manchester Children's Hospital) who 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 08/07/2014