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 (RDCRN) 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:

Joyce A. Kullman
Executive Director

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

Karen Erickson
Associative Executive Director

Alpha-1 Foundation
Childhood Liver Disease Research and Education Network
3300 Ponce de Leon Blvd.
Coral Gables, FL, 33133
Phone: 805-573-0653