Disease Information from NORD, National Organization for Rare Disorders, Inc.

The National Organization for Rare Disorders (NORD)

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This is the list of organizations in NORD’s Organizational Database.

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Read about more than 2,000 patient organizations and other sources of help.

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**IMPORTANT** The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Acid Maltase Deficiency Association, Inc.
a/k/a: AMDA

Address:
P.O. Box 700248
San Antonio, TX 78270-0248

Phone: 210-494-6144
Fax: 210-490-7161
800 Number: --
TDD: --
Email Address: tianrama@aol.com

The Acid Maltase Deficiency Association, Inc., is a non-profit organization directed toward the advancement of research in acid maltase deficiency (also known as Pompe's disease). Pompe's disease, a glycogen storage disease with onset during infancy, childhood, or adulthood, is inherited as an autosomal recessive genetic trait. Symptoms develop due to deficiency of the enzyme, alpha-1, 4 glucosidase. Founded in 1995 and consisting of over 500 members, the association publishes brochures and informational literature; sponsors an annual conference for the scientific community to discuss crucial issues related to Pompe's disease; and maintains a patient/family registry. This registry is used to disseminate information to affected families about current scientific breakthroughs, dietary information, and other issues vital to daily living. In addition the AMDA sends out a newsletter and sponsors patient informational teleconference calls.

Website: http://www.amda-pompe.org

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Last modified Tuesday, September 07, 2010