How can we help

The AGSD (UK) exists to support families touched by any one of the Glycogen Storage Diseases (GSDs). The Pompe Group specialises in understanding the needs of families touched by GSD Type II, Pompe Disease.

We can help in many ways and you can help us. We need to understand problems faced by and the level of care provided to this tiny group of people in the UK so that we may help to solve problems as they arise. Please do contact us if you cannot find answers to your questions within these pages.

The Pompe Group organises a Pompe's session at the annual AGSD (UK) conference. This has allowed us to hear first hand accounts of the clinical trials of enzyme replacement therapy and to quiz senior representatives of the companies involved. It also provides an occasion for people to meet each other and realise that they are not, after all, the only person in the world with this rare disease!

We publish a regular newsletter, the Pompe Bulletin, which keeps people in touch with developments on the Pompe scene worldwide. If you subscribe to our mailing list we will email you with news and mail you a copy of the Pompe Bulletin (UK only).

We have a Pompe's Fund which is a vehicle for supporting research into Pompe Disease. The Fund was able to support the enzyme replacement therapy work of Drs Arnold Reuser and Ans van der Ploeg at a crucial stage.
We aim to represent the diverse interests of UK Pompe's patients in our dealings with the medical and scientific profession, pharmaceutical companies and other bodies.

If you want to be kept in touch with what we're doing - or even better, to help us do it - then do please contact us.