You are here: Home / Rare Disease Information / Patient Organizations Database

Search Patient Organizations

Enter organization name or disease name to search for organizations that help people with rare diseases.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z

**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.

DuchenneConnect

a/k/a: DC

Address

Emory University, Department of Human Genetics
2165 N. Decatur Road
Atlanta, GA 30033

Phone

404-778-0553

Fax

404-935-0636

Email Address

coordinator@duchenneconnect.org

Website

http://www.duchenneconnect.org

The mission of DuchenneConnect is to provide resources to help individuals with Duchenne and Becker muscular dystrophy and their families understand the steps that may be required to confirm the diagnosis, and the benefits and limitations of genetic testing. The program works with regional and local resources where possible. DuchenneConnect allows participants to join the Registry to access services such as genetic counseling and genetic testing, and resources to assist in the understanding and development of new treatment trials in Duchenne/Becker muscular dystrophy. Becker muscular dystrophy is in the category of inherited muscle wasting diseases caused by a gene abnormality (mutation) that results in deficient or abnormal production of the dystrophin protein (dystrophinopathies). Duchenne muscular dystrophy (DMD) is characterized by weakness and wasting (atrophy) of the muscles of the pelvic area followed by the involvement of the shoulder muscles. As the disease progresses, muscle weakness and atrophy spread to affect the trunk and forearms and gradually progress to involve additional muscles of the body.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z

NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.

 
Copyright ©2014 NORD - National Organization for Rare Disorders, Inc. All rights reserved.
The following trademarks/registered service marks are owned by NORD: NORD, National Organization for Rare Disorders, the NORD logo, RareConnect. .