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DuchenneConnect Celebrates One Year Anniversary
Date:1/23/2009

Online Resource Links Patients With Researchers, Clinicians

MIDDLETOWN, Ohio, Jan. 23 /PRNewswire-USNewswire/ -- Patricia A. Furlong, Founding President and CEO of Parent Project Muscular Dystrophy (PPMD), the largest non-profit organization in the United States focused on finding a cure for Duchenne muscular dystrophy (Duchenne), announced the one year anniversary of DuchenneConnect, a central online arena linking the resources and needs of the Duchenne and Becker muscular dystrophy community (those living with muscular dystrophy, their families, and caregivers) and the provider community (clinical care providers, policymakers, industry professionals, and the medical research fields).

(Logo: http://www.newscom.com/cgi-bin/prnh/20081009/DC38130LOGO)

DuchenneConnect provides 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. Information is available for those who may need to be retested and for those with a new diagnosis. The program works with regional and local resources where possible and connects participants to information about new treatments, trials, and services such as genetic counseling and genetic testing.

With over 1,300 registered patients and families, and 188 providers, Ms. Furlong has been thrilled with the quick growth of this still relatively new resource in muscular dystrophy. "Families affected by Duchenne and Becker muscular dystrophy do not always receive a proper diagnosis; fewer receive the most up-to-date treatments for these diseases. DuchenneConnect has given families across the country access to top researchers and clinicians in the field, as well as notification about clinical trials that may help their child. Gathering
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SOURCE Parent Project Muscular Dystrophy
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