Now available on YouTube, catch up on the RARE-X Introduction webinar, held June 23, 2022. In this webinar, members of the Koolen-de Vries Syndrome Foundation and Megan O’Boyle of RARE-X share an introduction to the RARE-X platform. The KdVSF is very excited about the launch of the KdVS Data Collection Program (DCP). When families contribute data, researchers, doctors and our community can understand more about Koolen-de Vries Syndrome and develop better treatments.
Participants in RARE-X can enroll from ANY country; however, they will need to be able to understand English. Translations for 3-5 additional languages are expected within the next year.