The Duchenne Registry

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The Duchenne Registry The DuchenneConnect registry connects families and people with Duchenne and Becker to researchers. It is supported by Parent Project Muscular Dystrophy.

As its name implies, DuchenneConnect represents the coming together of a wide range of entities and individuals who recognize the value in pooling their combined expertise and information. The organizers of DuchenneConnect come from leaders in the non-profit sector, government agencies and academic institutions. Regardless of their individual backgrounds, the thought leaders of DuchenneConnect share a common goal to increase the community’s ability to help one another through improved communication, and by doing so, to help the millions of people affected by Duchenne and Becker muscular dystrophy. The information provided on DuchenneConnect has been developed with the review, direction and advice from a group of experts in Duchenne and Becker muscular dystrophy. Advisors contribute to DuchenneConnect in many areas including reviewing educational materials, providing programmatic direction, advising on processes and procedures, and facilitating opportunities for outreach and collaboration. The operations team behind this incredible resource continues to refine and perfect the site so that it evolves to best serve the needs of the entire community. We are open to your suggestions and feedback.

Address

401 Hackensack Avenue, Fl 9th
Hackensack, NJ
07601

Telephone

+18885208675

Website

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