AGSD – United States

History and Purpose We were established in 1979 for the purpose of supporting parents of and individuals with any type of glycogen storage disease. Our organization is now comprised of members mainly from the United States and Canada, although there are members from other parts of the world.

Contributing to Other AGSD Groups In the past, we have given seed money to England (United Kingdom) and France as they began their organizations and most recently contributed to Argentina.

Our Focus To share successes and concerns when dealing with every type of GSD Sharing useful findings Providing support Creating an awareness of this condition to the public

Our Focus Stimulating research in the various forms of glycogen storage disease. Communicating the results to parents, affected individuals and the public as soon as possible.

The Ray Our newsletter is published 4 times per year. Includes articles about families and individuals that wish to share. new research findings. articles written by or about individuals. articles by professionals dealing with the various types of GSD through research and care. Recently, restarted the practice of printing synopses of the professionals that attend and present at our annual conference.

Our Medical Professionals Our professionals take an active role in our organization. At this time we have fourteen professionals on our Scientific Advisory Board plus others that are just involved personally with the organization.

Our Medical Professionals Each is willing to attend and present at our yearly conference. Are wonderful about giving of their time to mingle with parents and GSD affected individuals. Available to discuss individual issues, share research findings, or just lend encouragement and support.

Recent Research Project For the last few years we have given monetary support towards care guidelines for the various types of GSD with the outcome of publishing them for all professionals who are treating GSD individuals to see and learn. This research has been led by the American College of Medical Genetics. Our hope is that care will become more similar in treatment, yet also individualized for each GSD affected person.

Completed project We have recently updated our general brochure and patient–parent handbook for use in promoting understanding of the various types of GSD with an audience of both the families and affected individuals and promoting public awareness.

Supporting Each Other Our organization works together to support each other regardless of which type of GSD is involved. We give our support to all the doctors and professionals treating and/or involved in research for the better care of our members.