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KDVS Foundation

Enriching lives through education, awareness and research.

KDVS Foundation

Enriching lives through education, awareness and research.

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.

LEARN MORE ABOUT KdVS

Strategic Research Plan

Interested in Research? Check out completed research, partner updates and more.

LEARN ABOUT KdVS RESEARCH

Medical Advisory Board

Our Medical Advisory Board helps make critical decisions about research.

MEET THE MEDICAL BOARD

Want to see more?

Check out our Video page and our YouTube channel!

OUR LATEST

KDVS NEWS

By Megan Hartwell

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Traveling to the Kool Klinic: A Guide for Families in the Koolen-de Vries Syndrome Community

Helpful travel tips and resources for families visiting the Kool Klinic from across the U.S. and around the world. For many families in the Koolen-de Vries Syndrome (KdVS) community, traveling […]

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A Historic First: The Kool Klinic Opens This April

We’re thrilled that a milestone moment is being met for the Koolen-de Vries Syndrome Foundation (KdVSF) and our global community—the very first Kool Klinic is officially opening this April in […]

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By Megan Hartwell

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By Megan Hartwell

0 Comments

Service Pups: Loyal Companions in the Kool Kommunity

September is Service Dog Awareness Month; a perfect time to shine a spotlight on the incredible pups who play such an important role in the lives of individuals with Koolen-de […]

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Interested in reading more KdVS News?

KdVS NEWS

LEND A HAND

The generous support from our donors helps us find success. Thank you!

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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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