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Member benefits

Great Reasons to Be a Member

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.

Scholarships: The AGSD provides modest scholarships members who have GSD.


MEMBERSHIP IN THE AGSD

Membership in the AGSD is open to all persons 18 years of age or older, families (including minors), institutions, organizations, etc., that pay or defer the yearly membership dues regardless of location, race, creed, nationality, or other qualifications that could be considered discriminative or restrictive.

In order to receive copies of The Ray, our periodic newsletter, you must be an active, associate, or deferred member of the AGSD.

All annual AGSD memberships expire on December 31st.

There are two types of membership in the AGSD, Active Membership and Associate Membership.

Active Membership is limited to:
+ persons affected with Glycogen Storage Disease who are at least 18 years old,
+ parents of affected persons, + spouses of affected persons,
+ immediate relatives of Glycogen Storage Disease affected persons (limited to siblings and grandparents),
+ health professionals actively engaged in the treatment of Glycogen Storage Disease-affected persons,
+ scientists actively involved in Glycogen Storage Disease research.

Active members enjoy the rights, privileges, and responsibilities of the Association, including the right to vote and to hold office (provided their dues have been received by the Treasurer of the corporation before March 1st.)
Active members annual dues are currently FREE (U.S. funds only).

Associate Membership is available to:
+ all others not included under the definitions of active membership, and
+ any member unable to become an active member before March 1st.

Associate members enjoy the rights and privileges of the Association, excluding the right to vote and to hold office.
Associate members annual dues are currently FREE (U.S. funds only)

There are two ways to register for annual membership in the AGSD, by mail or online:.

Complete a membership registration form and submit it by mail, along with your dues payment, to the AGSD office.

The AGSD compiles an annual directory of all current active and associate members. The directory is distributed to all AGSD members in the Spring issue of our newsletter, The Ray. These membership lists are to be used for SUPPORT ONLY - whether for emotional (parent - affected) or professional guidance. These lists are NOT for solicitations or requests not approved by the AGSD Board of Directors. 


Become a member

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. 

Contact

Association for Glycogen Storage Disease

1542 Flammang Dr. PMB 1004
Waterloo Iowa 50702


info@agsdus.org

                    



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