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Mission

The purpose of the Association for Glycogen Storage Disease shall be to protect and promote the best interests of all persons and families affected by Glycogen Storage Disease [GSD]; to promote the establishment, improvement, and management of facilities for the treatment, study, education, shelter, recreation, recuperation and other general benefit to GSD-affected persons; to act as a vehicle of communication on GSD-related matters to patients, families, professionals, and the public; and to act as a focus for scientific, educational, and charitable activities related to the disease.

Purpose

The Association for Glycogen Storage Disease [AGSD] is a parent and patient oriented support group that is advised by a group of experienced medical professionals.

The AGSD was established in 1979 in order to create an organization which would be a focus for parents of and individuals with all types of GSD to communicate by:

  • sharing their successes and concerns
  • sharing useful findings
  • providing support
  • creating an awareness of this condition for the public
  • stimulating 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.

We need your help

Every dollar helps.  Consider donating today!

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Donation goal

20%
Goal:
$100,000.00
Collected:
$19,552.00

Member benefits

Connection: You are connected to a larger group banded together to produce positive results for Glycogen Storage Disease nationwide.

Conferences:  All members have the option to attend the AGSD Annual Conference. Conference registration cost and related expenses, however, are not included in membership dues.  Each year the conference draws upwards of  200 families.

Financial Assistance: The AGSD offers educational scholarships for college and vocational schools, conference travel assistance, and family medical assistance funds to qualifying members.

Grants: The AGSD offers grants to researchers.

Friendships Members can participate in AGSD events and meet lifelong friends who share, support and inform.

Public Policy / Advocacy: We strive to raise public awareness and provide education on key issues associated with Glycogen Storage Disease.

Publications: Through our quarterly digital newsletter, The Ray, our members get access to articles that are of interest to the AGSD community.

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About the Association

The 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.

Contact

info@agsdus.org
1542 Flammang Dr. PMB 1004
Waterloo Iowa 50702

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