Click on the registration button above to browse the agenda and speakers and to register! When can I register for the Patient Advocacy Summit? How much will registration be? What is the schedule? Will recordings be available to view?
The Koolen-de Vries Syndrome Foundation is proud to sponsor the 2021 Kool Kampaign for Research. 100% of the donations received will be used to fund KdVS research projects. We are using an online peer-to-peer fundraising platform that we are asking families to share with their friends (via email, social media, etc). Money can be raised […]
Join us Sunday, August 22, 2021 from 8-9 pm EDT for a virtual happy hour! Register using the link and come ready to visit other families.
Calling all KdVS caregivers! Our zoom topic of the month is "Behavior Challenges, Anxieties, Phobias, and Repetitive Behaviors". What has been challenging and how have you handled it? Register through the zoom link below to meet with other KdVS caregivers on September 19 from 8-9 pm EDT. What is KdVS Connect? KdVS Connect is a […]
Join us October 10, 2021 at 8 pm EST for KdVS Connect. This month's zoom call is an Emotional Support Group. Topics to discuss will include: What has been hardest about being a KDVS parent? How do you cope? What is KdVS Connect? KdVS Connect is a free monthly Zoom call to allow Koolen-de Vries […]
Join KdVS Connect's monthly Zoom call to discuss all things epilepsy! Approximately 50% of individuals diagnosed with Koolen-de Vries Syndrome are also diagnosed with epilepsy. On November 20, 2021 at 12:00 pm EST, parents are invited to share their child's epilepsy journey and learn from the experiences of other families. Get support, give support! What […]
Join us December 4, 2021 at 12:00 pm EST for a KdVS Connect just for all the Kool grandparents! This event is a virtual event, held through Zoom, so don't forget to register!
Dr. Daphna Landau is an orbital and oculoplastic surgeon at the Goldschleger Eye Institute, Sheba Medical Center, Israel, and a research affiliate at the division of Ophthalmology, Children’s Hospital of Philadelphia (CHOP). She has an MD degree from Tel Aviv University and a BSc in Mathematics with Computer Science from the Technion - Israel Institute […]
Join us on Zoom January 16, 2022 at 8 pm ET for an Emotional support group for KdVS parents/caregivers. What's been the most difficult part about being a KdVS parent? How do you cope?
Join us on February 9th, 2022 at 6 pm ET for a conversation with Prof. Angela Morgan and her PhD student, Olivia Van Reyk! They will be providing updates on their Speech Tracker study that builds on their previous research showing that speech and language is a core developmental challenge for children with Koolen-de Vries […]
