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RARE-X Introduction

June 23 @ 8:00 pm

Join Koolen-de Vries Syndrome Foundation and Megan O’Boyle of RARE-X for an introduction to the RARE-X platform. We are 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.

This webinar will be held on June 23, 2022 at 8 pm ET. It will be recorded and shared across social media so families can view it at their convenience.

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.

Don’t forget to register and submit any questions you might have!


Koolen-de Vries Syndrome Foundation