Resources- Specific Diagnosis Card Catalog- Glycogen Storage Disease

Related Disorders: Von Gierke's Disease, Pompe's Disease/Acid Maltase Deficiency, and Anderson Disease

  • Who to Contact
  • Where to Go to Chat with Others?
  • Learn More About it
  • Links
  • Who to Contact

    Acid Maltase Deficiency Association, Inc. (AMDA)
    P.O. Box 700248
    San Antonio, Texas 78270-0248
    (210) 494-6144 or (210) 490-7161
    Fax: (210) 490-7161 or (210) 497-3810
    E-mail: tianrama@aol.com
    Web: www.amda-pompe.org

    This Association was formed to assist in funding research and to promote public awareness of Acid Maltase Deficiency

    Association for Glycogen Storage Disease
    P.O. Box 896
    Durant, Iowa, USA, 52747-9769
    563-785-6038
    Web: http://www.agsdus.org/

    The Association for Glycogen Storage Disease is a parent and patient oriented support group that is advised by a national, experienced group of 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 GSD to communicate, share their successes and concerns, share useful findings, provide support as needed, create an awareness of this condition for the public, to stimulate 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.

    The AGSD presents a conference each year in the early fall. The conferences are set up to foster communications between families, and between families and professionals who could provide a better understanding of the disease, its implications and recommendations based on current clinical investigations. The approach has been broad-based, including input by physicians, dietitians, nurses, and others. The families also have their own meetings to broaden communications and provide mutual support.

    Where to go to Chat with Others

    GSDNET
    Glycogen Storage Disease Network

    Learn More About It

    Acid Maltase Deficiency (AMD): A Brief Summary
    From the Acid Maltase Deficiency Association

    Acid Maltase Deficiency (AMD) And Other Metabolic Diseases of the Muscle
    From the Muscular Dystrophy Association: "Ask the Experts"

    Glycogen Storage Disease I
    From the American Liver Foundation

    Glycogen Storage Disease II - Acid Maltase Deficiency
    From Online Mendelian Inheritance in Man (OMIM)

    Glycogen Storage Disease: What is it?

    Types of GSD

    Links

    Acid Maltase Deficiency Association (AMDA)

    Association for Glycogen Storage Disease

    Pompe's Disease Page
    United Kingdom

    Children's Fund for Glycogen Storage Disease Research

    Association for Glycogen Storage Disease
    United Kingdom

    International Pompe Association

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