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

the community into a registry with global partnerships provides crucial information to researchers and clinical investigators, and may further accelerate therapeutic discoveries. To see what was just the seed of an idea of a group of passionate leaders in the Duchenne community, blossom into a thriving online resource, is truly phenomenal. We may be many years from knowing the direct affect of the early intervention DuchenneConnect provides, but I believe it will prove an extremely positive and crucial tool."

Early in 2007, a group of thought leaders in the Duchenne muscular dystrophy community, led by PPMD, began discussing the need for a new kind of resource that would connect and serve the needs of the entire community. What they envisioned was a central hub that would bring together those living with the disease, along with their families, friends and caregivers, to connect them with medical research, clinical care, clinical trials and each other. At the same time, it would also be a resource for industries with an interest in Duchenne, allowing access to a database of information provided by patients and their families --information that could prove vital to advances in care and treatment. This resource, a breakthrough multidirectional information portal for Duchenne and Becker muscular dystrophy, would help connect these stakeholders, while providing them with resources never before available in one place. Today, DuchenneConnect is a robust and cutting-edge website and registry meeting the goals and expectations of its creators.

DuchenneConnect is a collaboration of Centers for Disease Control and Prevention (CDC); Innolyst, Inc.; Emory University, Department of Human Genetics; National Institutes of Health (NIH) Office of Rare Diseases: Collaboration, Education and Test Translation (CETT) Program; National Center for Biotechnology Information (NCBI); and PPMD and supported by advisory experts throughout the neu
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SOURCE Parent Project Muscular Dystrophy
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