This charter was developed by the Phelan-McDermid Syndrome Data Network (PMS_DN) Patient-Powered Research Network (PPRN), in partnership with the Phelan-McDermid Syndrome Foundation and their Parent Action Committee (PAC). The charter lays out the roles and responsibilities for members of the committee and the time commitment expected for patient-centered governance. Use this as guidance when developing a committee charter in your community.
PMS_DN formerly was a Network Partner of PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.

Disclaimer: This tool was developed and provided by a third party. Opinions and information in this content are those of the third party and do not necessarily represent the views of PCORI. Accordingly, PCORI cannot make any guarantees with respect to the accuracy or reliability of the information and data in this content.


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