current members of the AGSD Board of Directors
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AGSD GOVERNANCEThe AGSD is governed by a set of Bylaws and a Board of Directors and Officers. The Board is responsible for transacting the business of the corporation, establishing major administrative policies governing the affairs of the corporation, establishing committees and their guidelines, and reviewing the performance of any officer of the corporation. The Board of Directors shall review requests for funds from those seeking assistance and act upon such requests as they best serve the goals of the corporation. The AGSD Board of Directors consists of five [5] members elected from the AGSD Active Membership, the four AGSD Officers, and the Chairman of the Scientific Advisory Board. Each Director and Officer serves a three-year term. The Board of Directors holds a meeting just prior to the start of the AGSD annual conference, and has at least three conference calls during the year. The AGSD Officers carry out the daily operations of the Association. You may contact the AGSD by emailing info@agsdus.org. Every year, the Association for Glycogen Storage Disease has its General Meeting for members at the annual conference. Active members are able to comment and vote on proposals brought to this meeting from the Board of Directors and from individuals. The annual election nominations are also presented at this meeting. AGSD BYLAWS |
About the AssociationThe Association for Glycogen Storage Disease - AGSD - 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, create an awareness of this condition for the public, and to stimulate research in the various forms of glycogen storage diseases. This website provides basic information about the glycogen storage diseases. The information is intended to be of use to people affected by one of the glycogen storage diseases, their families, and other interested parties. 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. These pages are intended to help reduce that sense of isolation by providing not just information, but also a point of contact. | Contactinfo@agsdus.org Connect with us on Social Media |
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