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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Webinar with Dr. Bert de Vries

Coming up on June 25th at 11am EDT, don’t miss a conversation with Dr. Bert de Vries, clinical geneticist from The Netherlands, and member of the KdVS Foundation Medical Advisory Board. He will be sharing information about the current research into KdVS individuals.

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2021 Summit - REGISTER NOW!

Due to Covid-19, this year's summit is VIRTUAL. And - it's time to register! Get signed up today!

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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

25
Jun

Webinar with Dr. de Vries 11:00 AM

Coming up on June 25th at 11am EDT, don’t miss a conversation with Dr. Bert de Vries, clinical geneticist from The Netherlands, and member of the KdVS Foundation Medical Advisory Board. He will be sharing information about the current research into KdVS individuals. Register here: https://bit.ly/3uEAB1j 
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14
Jul

2021 VIRTUAL KdVS Patient Advocacy Summit 12:00 AM

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