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 […]

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, […]

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 the Koolen-de Vries Syndrome Foundation and KdVS Fellow Brooke Latour for an update on her past year of research. Don't forget to register!

Join the KdVS Foundation for a casual Meet & Greet virtual event! Kool individuals of all ages and their families are welcome to attend! The event takes place September 25, 2022 at 8 pm EASTERN TIME! Not sure what time that is for you? Check your time zone HERE! KdVSF Connect events are a great […]

Join the KdVS Foundation for a casual Meet & Greet virtual event! Kool individuals of all ages and their families are welcome to attend! The event takes place October 1, 2022 at 12 pm EASTERN TIME! Not sure what time that is for you? Check your time zone HERE! KdVSF Connect events are a great […]

Join the KdVS Foundation for the virtual Emotional Support Group. This support group is for KdVS Caregivers. The event takes place October 23, 2022 at 8 pm EASTERN TIME. Not sure what time that is for you? Check your time zone HERE! KdVSF Connect events are a great opportunity for the KdVS community to join […]

In honor of Epilepsy Awareness Month, this month's KdVS Connect revolves around all things KdVS and Epilepsy. This virtual support group is open to anyone interested in the topic and it takes places on Sunday, November 13, 2022 at 8 pm EASTERN. Not sure what time that is for you? Check your time zone HERE! […]

Join the KdVS Foundation for a virtual Meet & Greet for newly diagnosed families (diagnosis within the last two years). The event takes place Saturday, December 10, 2022 at 12 pm EASTERN TIME. Not sure what time that is for you? Check your time zone HERE! KdVSF Connect events are a great opportunity for the […]

The KdVS Foundation is proud to partner with Help Hope Live, a trusted medical fundraising nonprofit that supports the rare disease community across the country. Don’t take on out-of-pocket medical expenses alone: trust the nonprofit fundraising experts, and access benefits from one-on-one fundraising help to tax-deductible donations for donors to fundraising that won’t jeopardize your […]