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.

Strategic Research Plan

Interested in RESEARCH!? Check out our Strategic Research Plan from December of 2022.

RESEARCH

Patient Advocacy Summit Registration OPEN

Registration for the Koolen-de Vries Syndrome Foundation's Patient Advocacy Summit is now open! See you in July!

REGISTRATION

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OUR LATEST

KDVS NEWS

By Alayna

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KdVS Foundation awards Investigator Grant

For Immediate Release May 31, 2023 Koolen-de Vries Syndrome Foundation Working with St. Jude Children’s Research Hospital Through Investigator Grant Program WILMINGTON, N.C. – The Koolen-de Vries Syndrome (KdVS) Foundation […]

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The Koolen-de Vries Syndrome Foundation selected for the Rare Epilepsy Partnership Award

For Immediate Release April 11, 2023 The Koolen-de Vries Syndrome Foundation selected for the Rare Epilepsy Partnership Award WILMINGTON, N.C. – The Koolen-de Vries Syndrome (KdVS) Foundation has been awarded […]

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By Alayna

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By Alayna

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Chief Scientific Officer Announced

February 1, 2023 The Koolen-de Vries Syndrome Foundation is excited to announce that Dr. Anna Pfalzer, of Vanderbilt and COMBINEDBrain, has been hired as the Foundation’s first-ever Chief Scientific Officer. […]

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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``.