• KdVS Connect – Behavioral Challenges

    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 […]

  • KdVS Connect – Emotional Support Group

    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 […]

  • KdVS Connect – Epilepsy Discussion and Support

    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 […]

  • KdVS Connect – Grandparents Support Group

    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!

  • Pediatric Ophthalmology Webinar

    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 […]

  • KdVS Connect – Emotional Support Group

    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?

  • Webinar – Speech Tracker Study

    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 […]

  • KdVS Connect – Regional Groups

    Join us for KdVS Connect on February 12, 2022 at 12 pm ET. This month's theme is connection within your geographic region. Registration link below - make sure you tell us where you are joining our Zoom call from (Europe, Australia/New Zealand, Central/South America, Africa, Asia, or if inside the USA, please specify general region).

  • KdVS Connect – Young Adults & Parents

    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!

  • KdVS Connect – Verbal Speech Discussion

    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!