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Patient Advocacy Groups


We Stand with Patients

Patient Advocacy Groups (PAGs) are organizations that promote the needs and priorities of patients. One feature of the RDCRN is the direct involvement of patient groups in network operations, activities, and strategy. These patient groups collectively represent the perspective and interests of patients with rare diseases. Click on the tiles displayed below to find patient groups affiliated with each consortium.

Learn About the Coalition of Patient Advocacy Groups

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.


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.