An important feature of the RDCRN network is the direct involvement of patient advocacy groups (PAGs) in network operations, activities, and strategy. 

Each rare disease research group (consortium) in the RDCRN network includes relevant PAGs in their consortium membership and activities. These PAG representatives advise the researchers within their consortium by joining network-level discussions and meetings. The RDCRN patient advocacy groups collectively represent the perspective and interests of patients with rare diseases.

As the patient advocacy arm of the RDCRN, the Coalition of Patient Advocacy Groups (CPAG) and its members use their position to advance the cause of rare diseases research and improve patient outcomes. The 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.

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CPAG Vision

To make faster progress toward new treatment options and cures that can improve the lives of those affected by rare diseases.

CPAG Mission

As the patient advocacy arm of the Rare Diseases Clinical Research Network, the Coalition of Patient Advocacy Groups (CPAG) members will work to advance the cause of rare disease research and improved patient outcomes through the network. The CPAG promotes collaboration between rare disease advocacy organizations and the Rare Diseases Clinical Research Network to improve access to—and benefit earlier from—research conducted on rare diseases.

Kristen Wheeden + Brady

Hear from Kristen Wheeden, our current CPAG chair, about the challenges of advocating for porphyria patients and her goals for the RDCRN

Tracy Hart

Hear from Tracy Hart, our past CPAG chair, about the importance of fostering connections in rare disease patient advocacy