Enter a disease name to find a patient advocacy group

Through collaboration, patient advocacy groups and researchers can make faster progress toward new treatment options and cures, which can improve the lives of all persons and families affected by a rare disease.

What is the RDCRN Coalition of Patient Advocacy Groups (RDCRN-CPAG)?

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:

Charles A. Mohan, Jr.
RDCRN-CPAG Chair

CEO/Executive Director

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
Fax: 412-793-6477
chuckm@umdf.org

Janet Hieshetter
RDCRN-CPAG Co Chair
Executive Director

Dystonia Medical Research Foundation
Dystonia Coalition (DC)
1 E. Wacker Drive, Suite 2810
Chicago, IL 60601
Phone: 312-755-0198
jhieshetter@dystonia-foundation.org

Joyce A. Kullman
RDCRN-CPAG Co Chair
Executive Director

Vasculitis Foundation
Vasculitis Clinical Research Consortium (VCRC)
PO Box 28660
Kansas City, MO 64188
Phone/Fax: 816-436-8211
jakullman@vasculitisfoundation.org