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 consortium name to view supporting patient advocacy groups

RDCRN Coalition of Patient Advocacy Groups (RDCRN-CPAG)

The RDCRN Coalition of Patient Advocacy Groups (CPAG) promotes collaboration between patient advocacy groups 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 Steering Committee meets throughout the year to help facilitate the development of activities that will benefit the entire CPAG membership. Those activities include (but are not limited to) webinars, in-person meetings, and one-on-one connections with other CPAG members and RDCRN researchers.

Coalition of Patient Advocacy Groups Webinar Series

From July 2020 through January 2021, the RDCRN-CPAG will host a five-part, bi-monthly webinar series entitled, “Navigating the World of Rare Disease Clinical Trials from the Patient Perspective.” Please check back periodically for new postings.

CPAG Webinar: An Introduction to Clinical Trials, 7-23-20 from RDCRN on Vimeo.


Clinical Trials - Working with your Patient Community, 10-25-20 from RDCRN on Vimeo.

RDCRN-CPAG Leadership

Tracy Smith Hart
RDCRN-CPAG Steering Committee Chair
Chief Executive Officer

 

Osteogenesis Imperfecta Foundation, part of the Brittle Bone Disorders Consortium (BBD)
804 W. Diamond Avenue, Suite 210
Gaithersburg, MD 20878
Phone: 301-947-0083
Email: THart@oif.org

Kristen Wheeden
RDCRN-CPAG Steering Committee Co-Chair
Executive Director

American Porphyria Foundation, part of the Porphyrias Consortium
4915 St. Elmo Avenue, Suite 200
Bethesda, MD 20814
Phone: 866-APF-3635
Email: kristen@porphyriafoundation.org