Global Network

International Pompe Association

The IPA is a federation of Pompe disease patient's groups world-wide; currently it represents around 35 countries. It seeks to coordinate activities and share experience and knowledge between different patient groups, amongst other objectives. Its mission statement and objectives can be viewed at www.worldpompe.org/ipaobj.html.

The Pompe Coordinator of the AGSD (UK) currently has a position on the board of the IPA. The IPA represents the global Pompe community and works closely with industry, health professionals and researchers.

The IPA website address is www.worldpompe.org.

Through the IPA website you can

• Read updates on clinical trials, treatment studies, and standards of care
• Access links to research articles, IPA conference summaries
• Read accounts from patients and parents of young children who have taken part in clinical trials
• Obtain a list of worldwide sources of financial support for children in need
• Find a patient group contact for your country.
• If your country does not have a group contact, you can receive information about becoming one yourself.

GSDNet - Contact other families

GSDNet is an electronic mailing list intended to allow communication between families, individuals and professionals with an interest in glycogen storage disease. Many members are either adults with Pompe, or parents of affected children. Although it is a list for all types of Glycogen Storage Disease (GSD), there is a facility to restrict posts to those concerning Pompe.Click here to subscribe to GSDNet

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