Ms. Rangel Miller, who along with Ms. Furlong has been with DuchenneConnect since its inception, stresses the incredible influence the site is having on the medical community, and more specifically rare diseases: "DuchenneConnect is leading the way by providing a forum to unite patients with medical and research communities. The contribution of patient information to the registry has been an asset to a variety of clinical organizations, a trend which we predict will continue as the registry grows. Given its novel approach, DuchenneConnect has also become a model resource and registry emulated by other rare disease communities."
Duchenne, the most common form of childhood muscular dystrophy, is a progressive and fatal muscle disorder affecting boys and young men that causes the loss of muscle function, wheelchair dependency and a decline in respiratory and cardiac function.
To explore DuchenneConnect and experience the breadth and depth of its resources, as well as to see a complete list of contributors and advisors, please visit www.duchenneconnect.org.
Parent Project Muscular Dystrophy (PPMD) is a national not-for-profit organization founded in 1994 by parents of children with Duchenne and Becker muscular dystrophy. The organization's mission is to improve the treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy through research, advocacy, education and compassion. PPMD is headquartered in Middletown, Ohio with offices in Fort Lee, New Jersey. For more information, visit www.parentprojectmd.org.
SOURCE Parent Project Muscular Dystrophy
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