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 Tri to be Kool Virtual Triathlon

Join us October 17 - November 17, 2019 in the virtual ``Tri to be Kool`` KDVS Triathlon. This fun event (easily customized to your abilities) reminds us how hard our Kool friends work every day while raising awareness about the syndrome!

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KDVS NEWS

By Alayna

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KdVS Foundation attends Global Genes Summit

Board Member Andy Speirs and his wife, Virginia, represented Koolen-de Vries Syndrome Foundation at the Global Genes Patient Advocacy Summit. They were able to network and make great contacts in the rare disease community while sharing information about KdVS and a link to our new video (https://youtu.be/6mqYyJcQY50). We had a wonderful time attending the 2019 […]

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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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By Alayna

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By Alayna

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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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CHECK OUT OUR UPCOMING EVENTS

17
Oct

2019 KdVS Triathlon 12:00 AM

Raise awareness for Koolen-de Vries Syndrome and show your support for all of our hard-working friends living with KdVS! **T-shirts are being ordered and registration has closed for the 2019 event. Our athletes are all hard at work logging miles! Join Koolen-de Vries Syndrome Foundation in our 2019 “Tri” to be Kool Virtual Triathlon! This is our […]
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