Patient Organizations (Patient Advocacy Groups)

Patient Advocacy Groups (PAGs) are organizations that promote the needs and priorities of patients. This could include supporting research for a specific disease, promoting awareness of a disease, and educating the community about a disease, among other activities. Most patient advocacy groups represent one or a few specific diseases.

One feature of the RDCRN is the direct involvement of PAGs in network operations, activities, and strategy. Each rare disease research group (consortium) in the network includes relevant PAGs in consortium membership and activities. These PAG representatives advise the researchers within their consortium by joining network-level discussions and meetings. The RDCRN PAGs consist of PAGs directly affiliated with an RDCRN consortium, and collectively represent the perspective and interests of patients with rare diseases.

How do I find a patient organization if I don’t know the rare diseases research group?

You can find out the rare diseases research group with our rare disease search tool, which will also provide you a list of the available patient organizations.

Click on a rare diseases research group to learn more about their supporting advocacy groups.

RDCRN Coalition of Patient Advocacy Groups (RDCRN-CPAG)

The RDCRN-CPAG promotes collaboration between PAGs and the RDCRN to facilitate better access to, and earlier benefit from, research on rare diseases. As the patient advocacy arm of the RDCRN, the RDCRN-CPAG and its members use their position to advance the cause of rare diseases research and improve patient outcomes. The RDCRN-CPAG meets throughout the year via teleconference and face-to-face meetings.

RDCRN-CPAG Leadership

Joyce A. Kullman
Executive Director

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

Cynthia LeMons
Executive Director

National Urea Cycle Disorders Foundation
Urea Cycle Disorders Consortium (UCDC)
75 S. Grand Ave.
Pasadena, CA, 91105
Phone: 626-578-0833