Coming Fall 2016!
FND Hope is the recipient of grant support from the Genetic Alliance. The Genetic Alliance provided guidance for creating and maintaining a registry, the necessary documentation, outreach guidance, a state of the art technology platform and institutional review board (IRB) approval. The Genetic Alliance hosts a participant-centered research network, the Platform for Engaging Everyone Responsably (PEER) is a cross-condition platform that empowers individuals to share health information on their own terms, by setting sharing, privacy and data access preferences.
This Platform is for demonstration only. To move through the survey you must answer the questions. However, your answers are not saved on the demo platform. Please send any enquires you have to firstname.lastname@example.org.
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