Association for Glycogen Storage Disease

Brochure:

Association for Glycogen Storage Disease print

Mission Statement:

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.

Conditions Served:

Organization Name: Association for Glycogen Storage Disease
Acronym: AGSD
Status of Org: Incorporated Nonprofit
Type of Org: Condition – specific - National
Have 501(c)3 Status: Yes
Year Established: 1979
Professional/Medical Board: Yes
Board of Directors: Yes
Paid Staff: No
Services Provided in these Languages: English
Annual Budget: $49,000.00
Do you receive funding from a company(s) that produce a test or treatment for the condition your organization serves?: Yes
If yes, % of funding from such companies?: 16%
# of People with Conditions on Your Mailing List: 300
Total # of People on Mailing List: 400
# of Active Members/Volunteers in Your Organization: 400
Membership Size: 450
# of Chapters: 1
 
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Address & Contact

Organization Address

Contact Persons

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Educational Materials

Information Provided for

  • Affected Individuals
  • Families of Affected Individuals
  • Care Providers
  • Parents
  • Fathers
  • Mothers
  • Siblings
  • Grandparents
  • Health Care Professionals
  • The Public
  • Teachers
  • Students
  • Media

Printed Materials Provided in

  • English

        Educational Materials Include

        • Pamphlet(s)
        • Booklet(s)
        • Newsletter

          Conferences & Workshops

          • Affected Individuals and/or Families
          • Public
          • Researchers
          • Professionals

          Service and Support Information

          Range of Services Include

          • Medical Referrals
          • Genetic Counseling
          • Rehabilitation Resource Referrals
          • Financial Referrals

          Financial Assistance for

          • Medical Care
          • Transportation
          • Scholarships For Affected Individuals

            Research Information

            Cohort Development

            Registry of Affected Individuals: No

            Disease Characterization

            Is there a diagnostic test available?: Yes

            Research Management

            Major Research Interests of the Organization: Clinical Practice Guidelines for each Type of GSD
            Current Projects: Guidelines Development

            Research Funding

            No information is available for Research Funding.

            Resources