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.

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KdVS Awareness Day

Mark your calendars for July 17 - Koolen-de Vries Syndrome Awareness Day!

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Kool Kampaign 2021

Join the Koolen-de Vries Syndrome Foundation in raising funds for research as part of our 2021 Kool Kampaign!

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Visit our What is KdVS page for more videos!

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KDVS NEWS

By Alayna

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$100,000 Grant Awarded

For Immediate Release June 22, 2021 Koolen-de Vries Syndrome Foundation Awards $100,000 Grant to Post-doctoral Fellow for Further “Brain-in-a-Dish” Research WILMINGTON, N.C. – The Koolen-de Vries Syndrome Foundation recently awarded a $100,000 post-doctoral fellowship grant award to post-doctoral fellow Dr. Brooke Latour for her work in neural development and neurodevelopmental disorders, and how it relates […]

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Navigating Life with Koolen-de Vries Syndrome

Ethan Deremer is 23 years old and was diagnosed with Koolen-de Vries Syndrome in 2014. He recently submitted a short essay and was featured on the Our Odyssey website. Our Odyssey connects young adults who are impacted by a rare or chronic conditions with social and emotional support in the hope of improving their quality […]

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By Alayna

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By Alayna

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KdVS Foundation hosts a webinar with Dan Morreale

On May 13th, Koolen-de Vries Syndrome Foundation hosted a webinar with Special Education teacher and Kool Dad Dan Morreale. Dan discussed Individual Education Plans (IEPs) and planning for a successful school year. Viewers of the webinar submitted many outstanding questions and Mr. Morreale was able to answer as many as time permitted. Missed the webinar? […]

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CHECK OUT OUR UPCOMING EVENTS

17
Jul

Kool Kampaign 2021 12:00 AM

The Koolen-de Vries Syndrome Foundation is proud to sponsor the 2021 Kool Kampaign for Research. 100% of the donations received will be used to fund KdVS research projects. We are using an online peer-to-peer fundraising platform that we are asking families to share with their friends (via email, social media, etc). Money can be raised […]
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