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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE

www.agsdus.org Tax ID 42-1130450

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The Association for Glycogen Storage Disease was established in 1979 in order to create an organization which would be a focus for parents of and individuals with glycogen storage disease (GSD) to communicate, share their successes and concerns, share useful findings, provide support as needed, create an awareness of this condition for the public, to stimulate research in the various forms of glycogen storage diseases and have the results communicated - to the parents, affected individuals and the public - as soon as possible.

Some forms of GSD cause little in the way of illness, while others are life threatening. Included in this site is a description of the general symptoms, associated problems, current treatment, and long-term outcome for the most commonly diagnosed glycogen storage diseases. It does not do justice to the difficulty patients and their families’ experience, and their deep desire for improved forms of treatment or ultimately total correction.

Diagnosis of a rare genetic disease can be a very lonely experience for the patients and their families, and in some cases, for their doctors also. We hope to help reduce that sense of isolation by providing not just information but also a point of contact.