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 […]

Join KdVS Foundation's Kaci Fisher on June 14, 2022 at 6 pm ET as she speaks with Bea Moise about the siblings of special needs individuals. The first half of the webinar Bea Moise will discuss a sibling's perspective and the second half will be open for questions and discussions. Beatrice (Bea) Moise, M.S., BCCS, […]

Koolen-de Vries Syndrome Foundation, iDefine and SETBP1 Society are excited to form a partnership called “It Takes a Village”. Through this partnership, our wonderful communities will have the chance to share resources and join informative webinars that apply to our populations. This webinar is for families with children in 5th grade through 12th grade. Join […]