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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.


Medical Advisory Board

Our Medical Advisory Board helps make critical decisions about research. Meet the board members!


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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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Member Organizations

Global Genes Rare Foundation Alliance
Guidestar Silver Seal
The orphan disease center member
The Jumpstart Program Member
Rare Epilepsy Network
Patients Alliance Member IndoUSRare
DEE-P Connections