Promoting Partnerships Between Advocacy Groups and Researchers

IMFAR Special Interest Group, 2017 San Francisco, CA May 13, 2017 Summary: 71 people attended and signed in to the SIG, not counting presenters and organizers. Just under half were considered early career scientists. Almost everyone indicated that they wanted to continue to participate in ongoing discussions and planning of activities that developed as a result of the SIG. Part 1 Presentation of mission and accomplishments of some of the Patient Advocacy Groups Speakers: Shafali Jeste, UCLA Steve Roberds, TS Alliance John Spiro, Simons Foundation Geraldine Bliss, PMS Foundation Vanessa Vogel-Farley, Dup15q Alliance Primary Goals: Facilitate a more direct dialogue between PAGs and researchers

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