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. 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

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Join the Contact Registry

The Koolen-de Vries Syndrome Foundation is passionate about preparing our community to be “research ready”. One critical step is having a contact registry of diagnosed families. Did you know that there is no one database of diagnosed individuals anywhere in the world? We are often asked how many people are diagnosed with KdVS and the […]

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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 […]

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By Alayna

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By Alayna

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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 […]

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Interested in reading more KdVS News?

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

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CHECK OUT OUR UPCOMING EVENTS

01

KdVSF Connect – Kool Family Meet & Greet 12:00 PM

Join the KdVS Foundation for a casual Meet & Greet virtual event! Kool individuals of all ages and their families are welcome to attend! The event takes place October 1, 2022 at 12 pm EASTERN TIME! Not sure what time that is for you? Check your time zone HERE! KdVSF Connect events are a great […]

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23

Oct

KdVSF Connect – Emotional Support Group 8:00 PM

Join the KdVS Foundation for the virtual Emotional Support Group. This support group is for KdVS Caregivers. The event takes place October 23, 2022 at 8 pm EASTERN TIME. Not sure what time that is for you? Check your time zone HERE! KdVSF Connect events are a great opportunity for the KdVS community to join […]

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13

Nov

KdVSF Connect – Epilepsy Discussion and Support 8:00 PM

In honor of Epilepsy Awareness Month, this month’s KdVS Connect revolves around all things KdVS and Epilepsy. This virtual support group is open to anyone interested in the topic and it takes places on Sunday, November 13, 2022 at 8 pm EASTERN. Not sure what time that is for you? Check your time zone HERE! […]

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10

Dec

KdVSF Connect – Newly Diagnosed Meet & Greet 12:00 PM

Join the KdVS Foundation for a virtual Meet & Greet for newly diagnosed families (diagnosis within the last two years). The event takes place Saturday, December 10, 2022 at 12 pm EASTERN TIME. Not sure what time that is for you? Check your time zone HERE! KdVSF Connect events are a great opportunity for the […]

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07

Jan

KdVSF Connect – Kool Family Meet & Greet 12:00 PM

Join the KdVS Foundation for a casual Meet & Greet virtual event! Kool individuals of all ages and their families are welcome to attend! The event takes place January 7, 2023 at 12 pm EASTERN TIME! Not sure what time that is for you? Check your time zone HERE! KdVSF Connect events are a great […]

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05

Feb

KdVSF Connect – NEW Emotional Support Group Series 8:00 PM

We are trying something NEW! In the past, the KdVSF Connect Emotional Support group meetings have been very popular. This February, we are offering a small group series of emotional support group meetings. This group will meet four times in the month of February and we ask attendees to commit to attend 3 of the […]

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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``.