About the Pompe Pages

Are you are a patient - or a parent - who has been given a diagnosis of
Pompe disease? Are you a healthcare professional who has a patient
diagnosed with Pompe?

If so, this page has an important message for you: You are not alone!

The diagnosis of a rare disease like Pompe can be a shattering and isolating experience for both patients and doctors. Thanks to the Internet, that need no longer be the case. Here you will find information on Pompe disease (acid maltase deficiency, glycogen storage disease type II), and links to information elsewhere on the web. The information here is presented with affected families and individuals in mind but may also be of use to medical and scientific students and professionals.

Aside from information, another thing that you may want is contact with other families and individuals. If you live in the UK, we can put you in touch with other members of the Pompe Group of the AGSD (UK) in your approximate area. If you are based elsewhere in the world, you can do this via the patients groups listed on the International Pompe Association website. Another way of making contact with others is via GSDNet, the glycogen storage disease mailing list. GSDNet covers all types of GSD but it is possible to restrict posts received to those concerning Pompe disease. Click on Global Network to learn more.