Coalition of Patient Advocacy Groups (CPAG)

Collectively, the Coalition of Patient Advocacy Groups (CPAG) represents the perspective and interests of all patient advocacy organizations associated with the clinical research consortia. Through collaboration, patient advocacy groups and researchers can make faster progress toward new treatment options and cures, which can improve the lives of all persons and families affected by a rare diseases.

What is CPAG?

One impressive feature of the Rare Diseases Clinical Research Network is the direct involvement of supporting patient advocacy groups in network operations, activities, and strategy. Each consortium in the network includes relevant patient advocacy groups in the consortium membership and activities. These patient advocacy group representatives serve in an advisory capacity within their own consortia.

Collectively, the Coalition of Patient Advocacy Groups (CPAG) represents the perspective and interests of all patient advocacy organizations associated with the clinical research consortia. The CPAG group meets frequently throughout the year via teleconference and face-to-face meetings.

CPAG members influence the direction of the Rare Diseases Clinical Research Network as a whole. They participate in network-level discussions and meetings. The CPAG coalition is a voting member of the RDCRN Steering Committee.

As a group, CPAG members have adopted the following vision and mission statements:

CPAG Vision

Through collaboration, patient advocacy groups and researchers can make faster progress toward new treatment options and cures, which can improve the lives of all persons and families affected by a rare disease.

CPAG Mission

The Coalition for Patient Advocacy Groups will promote collaboration between rare disease advocacy organizations and the Rare Diseases Clinical Research Network in order to facilitate better access to, and earlier benefit from, research conducted on rare diseases.  As the patient advocacy arm of the Rare Diseases Clinical Research Network, CPAG members will use their position to advance the cause of rare disease research and improved patient outcomes through the network.

 

More at:  http://rarediseasesnetwork.epi.usf.edu/cpag/