Join Koolen-de Vries Syndrome Foundation for a virtual Zoom event. March 13, 2022 at 8 pm ET - KdVS young adults and their parents are invited to discuss transitions to adulthood and independent living. Don't forget to register!

Join the Koolen-de Vries Syndrome Foundation for a virtual KdVS Connect zoom call. On April 9, 2022 at 12 pm ET, attendees will have the chance to discuss all things related to speech. What works or has worked for your Kool Kid? How has communication changed or improved with age? Don't forget to register!

Join the KdVS Foundation for a conversation with Kool Mom and dentist, Dr. Katie Pecheck. Register and submit your dental questions here.   After registering, you will receive a confirmation email containing information about joining the webinar.

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. The first webinar is for families with children in PreK thru 4th grade. Join […]

Join the Koolen-de Vries Syndrome Foundation for a virtual support group on May 22, 2022 at 8 pm ET. Discussion will revolve around navigating Kool Kid participation with neuro-typical groups in school, sports and making friends.  Don't forget to register!

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 […]