What is Koolen-de Vries Syndrome?

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.

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KdVS on NORD

Are you looking for a great summary of KdVS? Dr. Bert de Vries provided an excellent write-up (2022) to the NORD Rare Disease Database.

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Kool Warriors

Do you love the Kool Warrior posts on social media? Now you can enjoy all the Kool Warriors in one place!

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Visit our What is KdVS page for more videos!

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Contact Registry

Koolen-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``.

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