PAG

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 perspectives and interests of patients with rare diseases.

To learn more, please click here: https://www.rarediseasesnetwork.org/patient-advocacy-groups

CPAG

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.

To learn more, please click here: https://www.rarediseasesnetwork.org/patient-advocacy-groups/cpag

CPAG STEERING COMMITTEE

Constituted in December 2019, the role of the Coalition of Patient Advocacy Groups (CPAG) Steering Committee is 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.

The PI of each consortium selects one PAG member to participate in the CPAG Steering Committee. CPAG Steering Committee members commit to attending monthly one-hour teleconference meetings and to participating collaboratively with other members on projects identified to help accelerate research as outlined in the CPAG vision and mission statements. In addition, CPAG Steering Committee members disseminate information and decisions from the CPAG Steering Committee meetings to the PIs and other PAGs within their consortium.

To learn more, please click here: https://www.rarediseasesnetwork.org/patient-advocacy-groups/cpag/steering-committee