Apr 07 2021

Family Advocates – Share your experience: Running a registry

Published by at 4:47 pm under Family Advocate

Many advocacy groups report being frequently contacted by other organizations to share their experience with operating registries. Help reduce this burden for you and for others by taking this survey from Genetic Alliance. Any advocacy organization who operates a registry is invited to reply. Genetic alliance will compile the answers and share the results with their network.

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