Koolen-de Vries Syndrome is a genetic syndrome caused by a deletion on the 17th chromosome at 17q21.31 or by a mutation of the KANSL1 gene. Find out more about the syndrome.
MOREAre you looking for a great summary of KdVS? Dr. Bert de Vries provided an excellent write-up (2022) to the NORD Rare Disease Database.
VISIT NORDDo you love the Kool Warrior posts on social media? Now you can enjoy all the Kool Warriors in one place!
MOREBy Alayna
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By Alayna
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By Alayna
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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 […]
READ MOREJoin 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 […]
READ MOREAre 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 […]
READ MOREAre 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 […]
READ MOREKoolen-de Vries Syndrome Foundation maintains a confidential database of KdVS families from around the world. This database allows us to help families make connections in their geographic areas, understand where the KdVS community resides and share with our Medical Advisory Board the number of individuals registered. If you have any questions, please send us a message through ``Contact Us``.