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.

KdVS on NORD

Are you looking for a great summary of KdVS? Dr. Bert de Vries provided an excellent write-up (2022) to the NORD Rare Disease Database.

VISIT NORD

Kool Warriors

Do you love the Kool Warrior posts on social media? Now you can enjoy all the Kool Warriors in one place!

Visit our What is KdVS page for more videos!

OUR LATEST

KDVS NEWS

By Alayna

0 Comments

Help KdVS Foundation become Research Ready

Do you love a discount? Do you love KdVS gear? What about helping further important research? If yes, read on for a really cool way YOU can make a difference. By simply providing your and/or your KdVS individual’s information to the studies and organizations below, you can help the KdVS Foundation become RESEARCH READY. Being […]

READ MORE

Research: Learn about RARE-X

Now available on YouTube, catch up on the RARE-X Introduction webinar, held June 23, 2022. In this webinar, members of the Koolen-de Vries Syndrome Foundation and Megan O’Boyle of RARE-X share an introduction to the RARE-X platform. The KdVSF is very excited about the launch of the KdVS Data Collection Program (DCP). When families contribute […]

READ MORE

By Alayna

0 Comments

By Alayna

0 Comments

KdVS Swimming Challenge – Spain

The KdVS Foundation is so grateful for individuals like María Luisa & Gonzalo. After last year’s success they’re launching the second edition of the Swimming Challenge! They expect to host it on July 16th with the same features as last year; the morning swimming challenge from Cadiz to El Puerto de Santa Maria (3.2 miles) […]

READ MORE

Interested in reading more KdVS News?

LEND A HAND

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

DONATE

CHECK OUT OUR UPCOMING EVENTS

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``.