About the Pompe Pages

Are you 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.

Extraordinary Measures

Don’t hope for a miracle. Be part of one

Have you been inspired by the recent film, Extraordinary Measures? Would you like to do something extraordinary to help UK families living with Pompe Disease? We are currently in the early stages of planning Mountain Bike Challenges, Treks and other events to give each participant an exhilarating experience and to raise funds for the AGSD-UK at the same time.  If you would like to sign up to receive further information on how you can participate, please email us using the "Register" button above and tell us which particular event excites you, whether it be biking, trekking, marathon running or anything that could be used to raise awareness and essential funds for our charity.

 The finish line of the Costa Rica Bike Challenge.

We at the AGSD-UK don't believe in miracle cures, but we do believe in the amazing power of collaboration. That's how the patient community, medical institutions and industry arrived at a therapy for Pompe disease and that's how the lives of families affected by this disease will be improved further. By choosing to support the AGSD-UK you will add an important page to the unfolding story of how the battle against this devastating disease was fought.

For past challenges that have raised funds for our cause, please go to our Events pages here.

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