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
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?
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