Videos

RARE-X Lunch & Learn – “How To Tell Your Story Through Data”

January 5, 2023

In this video, Christina O’Keeffe from Wiedemann-Steiner Syndrome Foundation presented their community’s strategy for getting families enrolled in their Data Collection Program (DCP) and how they used their de-identified data to tell stories at the family conference in October 2022.

Stay Connected

Sign up for updates straight to your inbox.

FacebookTwitterInstagramYoutube