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.

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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

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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) […]

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Roadmap Project

The Koolen-de Vries Syndrome Foundation is excited to announce that we are one of the 147 organizations which have partnered with the Castleman Disease Collaborative Network and the Chan Zuckerberg Initiative on the ROADMAP project. Repurposing Of All Drugs, Mapping All Paths What is Drug Repurposing? Drug repurposing is a way to get treatments to […]

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By Alayna

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By Alayna

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It Takes a Village – A Rare Collaboration

In an effort to leverage resources and take advantage of synergies, the patient advocacy groups IDefine, Koolen-de Vries Syndrome Foundation, and SETBP1 Society are teaming up to offer a webinar series called It Takes a Village on the first Saturday of the month. It Takes a Village will be a program full of useful, interesting, and […]

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CHECK OUT OUR UPCOMING EVENTS

27

Webinar with Brooke Latour, KdVS Fellow 8:00 PM

Join the Koolen-de Vries Syndrome Foundation and KdVS Fellow Brooke Latour for an update on her past year of research. Registration link coming soon.

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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``.