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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.

DanonDisease.org

a/k/a: DD

Address

12700 East 19th Avenue
F442, Room 8022
Aurora, CO 80045

Phone

303-724-1400

Fax

303-724-0858

Email Address

matthew.taylor@ucdenver.edu

Website

http://www.danondisease.org

The DanonDisease.org is a website developed primarily to provide patients and families with information about Danon disease. Information is also available for physicians. A registry has been developed that patients can join to learn more about this rare condition. Danon disease is a rare genetic disorder of which males are more severely affected than females. Among boys, the key features are diseased heart muscle (cardiomyopathy), weakness of the body muscles (skeletal myopathy) and intellectual disability ranging from mild learning problems to mental retardation. In many males, the disease progresses until a heart transplant is required or death occurs in the second to third decade of life. Females are also affected, although usually more mildly, and often onset is delayed until they reach adulthood.

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