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One impressive feature of the Rare Diseases Clinical Research Network is the direct involvement of supporting patient advocacy groups in network operations, activities, and strategy. Each consortium in the network includes relevant patient advocacy groups in the consortium membership and activities. These patient advocacy group representatives serve in an advisory capacity within their own consortia.
Collectively, the RDCRN Coalition of Patient Advocacy Groups (RDCRN-CPAG) represents the perspective and interests of all patient advocacy organizations associated with the clinical research consortia. The RDCRN-CPAG group meets frequently throughout the year via teleconference and face-to-face meetings.
Click on a consortium name to learn more about their supporting advocacy groups:
The United Mitochondrial Disease Foundation
North American Mitochondrial Diseases Consortium (NAMDC)
8085 Saltsburg Road - Suite 20
Pittsburgh, PA 15239
Phone: 412-793-8077, ext. 111
Dystonia Medical Research Foundation
Dystonia Coalition (DC)
1 E. Wacker Drive, Suite 2810
Chicago, IL 60601
Vasculitis Clinical Research Consortium (VCRC)
PO Box 28660
Kansas City, MO 64188