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 […]

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 January 7, 2023 at 12 pm EASTERN TIME! Not sure what time that is for you? Check your time zone HERE! KdVSF Connect events are a great […]

We are trying something NEW! In the past, the KdVSF Connect Emotional Support group meetings have been very popular. This February, we are offering a small group series of emotional support group meetings. This group will meet four times in the month of February and we ask attendees to commit to attend 3 of the […]

Come learn about GI issues such as reflux, feeding tubes, constipation, and more from pediatric GI doctor and Koolen-de Vries Syndrome dad Russ Zwiener. The discussion will be led by Kaci Fisher, a Koolen-de Vries Syndrome Foundation Board member and KdVS mom. This webinar is being co-hosted with DEE-P Connections. DEE-P Connections is dedicated to […]

Join the KdVS Foundation for the virtual Emotional Support Group. This support group is for KdVS Caregivers. The event takes place March 11, 2023 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 KdVS community to join […]

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 April 23, 2023 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 KdVSF Foundation to discuss Koolen-de Vries Syndrome and speech challenges. The event takes place May 21, 2023 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 together virtually to discuss topics […]

Are you attending the Koolen-de Vries Syndrome Foundation's Patient Advocacy Summit? This special KdVSF Connect is a chance to ask any of your last-minute Summit questions!   The event takes place June 10, 2023 at 12 pm EASTERN TIME! Not sure what time that is for you? Check your time zone HERE! KdVSF Connect events are […]

Are you attending the Koolen-de Vries Syndrome Foundation's Patient Advocacy Summit? This special KdVSF Connect is a chance to ask any of your last-minute Summit questions!   The event takes place June 11, 2023 at 8 pm EASTERN TIME! Not sure what time that is for you? Check your timezone HERE! KdVSF Connect events are a […]

Join the KdVS Foundation for a Meet & Greet open to all KdVS Individuals and their families! Join the zoom call to meet and greet new and old families alike. We look forward to connecting with you! Sunday, 10/22/2023 at 8 pm EST Thursday, 2/3/2024 at 8 pm EST Saturday, 5/18/2024 at 12 pm EST […]