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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Koolen-de Vries Research

Learn more about the latest research and how you can get involved.

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2019 KdVS Patient Advocacy Summit

Join us June 27-29, 2019 for the Koolen-de Vries Syndrome Patient Advocacy Summit. Meet the doctors and researchers involved with KdVS!

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KDVS NEWS

By Alayna

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2019 RARE Patient Impact Grant

The Koolen-de Vries Syndrome Foundation is proud to have been selected from among some 200 other applicants to receive the 2019 RARE Patient Impact Grant from Global Genes. Launched in 2015, this grant program directs financial support to RARE Foundation Alliance partner organizations and patient advocacy groups to provide education, resources and support to rare […]

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Concert Raises Awareness

This year, the KdVS Foundation welcomed the Speirs family into its global KdVS community. Andy and Virginia Speirs studied harp and cello performance at the University of Utah. Excited about the upcoming 2019 Patient Advocacy Summit in Park City, Utah, they organized and performed a harp/cello music concert to help raise funding and awareness for […]

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By Alayna

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By Alayna

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Dr. de Vries runs marathon

The Koolen-de Vries Syndrome Foundation and The Kool Kid Alliance are thrilled to have had the support Dr. Bert de Vries as he ran the New York City Marathon on November 4, 2018 to raise awareness for Koolen-de Vries Syndrome! Dr. de Vries approached both organizations about finding a way to use his race to […]

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CHECK OUT OUR UPCOMING EVENTS

27
Jun

2019 KdVS Patient Advocacy Summit 12:00 AM

We are pleased to present the 2019 KdVS Patient Advocacy Summit in Park City, Utah on June 27-29, 2019. Learn from top scientists, meet other families and Kool kids and enjoy the beautiful Utah mountains!
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17
Jul

KdVS Awareness Day 12:00 AM

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