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!

Check out our Video page for more videos!

Or head over to our YouTube channel!

OUR LATEST

KDVS NEWS

By Alayna

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Chief Scientific Officer Announced

February 1, 2023 The Koolen-de Vries Syndrome Foundation is excited to announce that Dr. Anna Pfalzer, of Vanderbilt and COMBINEDBrain, has been hired as the Foundation’s first-ever Chief Scientific Officer. Dr. Pfalzer has become very familiar with Koolen-de Vries Syndrome while working on the COMBINEDBrain team that developed a KdVS Strategic Research Plan over the […]

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Commercial featuring KdVS

Did you know that Cox Communications recently filmed and released an online commercial featuring three individuals diagnosed with Koolen-de Vries Syndrome? Thank you to Cox Communications and the Kool families for helping bring awareness to our syndrome!

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By Alayna

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By Alayna

0 Comments

One Kool Warrior’s Voice

Bec Tilley has a unique voice in the Koolen-de Vries Syndrome community as both a Kool Warrior herself and a mother to two very Kool children! Bec enjoys spending her time writing, but did you know she’s been published more than a dozen times? Looking for some inspiration? Peruse the following list of Bec’s writings […]

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Interested in reading more KdVS News?

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CHECK OUT OUR UPCOMING EVENTS

13

Come learn about GI issues such as reflux, feeding tubes, constipation, and more from pediatric GI doctor and Koolen-de Vries Syndrome dad Russ Zwiener. The discussion will be led by Kaci Fisher, a Koolen-de Vries Syndrome Foundation Board member and KdVS mom. This webinar is being co-hosted with DEE-P Connections. DEE-P Connections is dedicated to […]

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11

Mar

KdVSF Connect – Emotional Support Group 12:00 PM

Join the KdVS Foundation for the virtual Emotional Support Group. This support group is for KdVS Caregivers. The event takes place March 11, 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 opportunity for the KdVS community to join […]

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23

Apr

KdVSF Connect – Kool Family Meet & Greet 8:00 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 April 23, 2023 at 8 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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21

May

KdVSF Connect – Verbal Speech Challenges 8:00 PM

Join the KdVSF Foundation to discuss Koolen-de Vries Syndrome and speech challenges. The event takes place May 21, 2023 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 together virtually to discuss topics […]

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10

Jun

KdVSF Connect – Summit Discussion 12:00 PM

Are you attending the Koolen-de Vries Syndrome Foundation’s Patient Advocacy Summit? This special KdVSF Connect is a chance to ask any of your last-minute Summit questions! The event takes place June 10, 2023 at 12 pm EASTERN TIME! Not sure what time that is for you? Check your time zone HERE! KdVSF Connect events are […]

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11

Jun

KdVSF Connect – Summit Discussion 8:00 PM

Are you attending the Koolen-de Vries Syndrome Foundation’s Patient Advocacy Summit? This special KdVSF Connect is a chance to ask any of your last-minute Summit questions! The event takes place June 11, 2023 at 8 pm EASTERN TIME! Not sure what time that is for you? Check your timezone HERE! KdVSF Connect events are a […]

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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``.