Registry and Biorepository Learning Community call [March 9, 2023]

Topic: Advocating for your Registry/Biorepository with your Board

Description: We all have (or may have to in the future) needed to justify the cost and strategy involved in our registry/biorepository programs to a governing Board or other leadership. Durghis session members came prepared to hear about examples in the following areas and discuss their own experiences: risk v reward in program launch or growth, program sustainability, external partnerships, and others.

Informal presentations wasbe provided by the Barth Syndrome Foundation, PKD Foundation, and TSC Alliance.