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 Connect

Join us November 20, 2021 at 12 pm EST for this month's KdVS Connect about Epilepsy - support and discussion.

Call for Volunteers!

KdVS Foundation is run entirely by volunteers. A number of volunteer opportunities are available.

Visit our What is KdVS page for more videos!

OUR LATEST

KDVS NEWS

By Alayna

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Billy Footwear – Open Book Podcast

On November 3, 2021, KdVS Foundation president Ashley Point had the opportunity to join Billy Footwear on the Open Book podcast. She was able to raise awareness about Koolen-de Vries Syndrome and speak about the Foundation. You can watch the episode here. Open Book is a digital series from BILLY Footwear aimed to grow stronger […]

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New Medical Advisory Board Member

Koolen-de Vries Syndrome Foundation would like to announce the newest member of our Medical Advisory Board, Dr. Katie Pechek. Dr. Pechek completed her undergraduate degree in Athletic Training from Creighton University. She then earned a master’s degree in exercise physiology from the University of Oklahoma. In 2015, she returned to Creighton University where she completed […]

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By Alayna

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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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CHECK OUT OUR UPCOMING EVENTS

04

KdVS Connect – Grandparents Support Group 12:00 PM

Join us December 4, 2021 at 12:00 pm EST for a KdVS Connect just for all the Kool grandparents! This event is a virtual event, held through Zoom, so don’t forget to register!

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12

Pediatric Ophthalmology Webinar 11:00 AM

Dr. Daphna Landau is an orbital and oculoplastic surgeon at the Goldschleger Eye Institute, Sheba Medical Center, Israel, and a research affiliate at the division of Ophthalmology, Children’s Hospital of Philadelphia (CHOP). She has an MD degree from Tel Aviv University and a BSc in Mathematics with Computer Science from the Technion – Israel Institute […]

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16

Jan

KdVS Connect – Emotional Support 8:00 PM

Join KdVS Connect on January 16, 2022 at 8 pm ET for an Emotional Support Group. What has been the hardest part about being a KdVS parent? How do you cope? Registration link below!

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12

Feb

KdVS Connect – Regional Groups 12:00 PM

Join us for KdVS Connect on February 12, 2022 at 12 pm ET. This month’s theme is connection within your geographic region. Registration link below – make sure you tell us where you are joining our Zoom call from (Europe, Australia/New Zealand, Central/South America, Africa, Asia, or if inside the USA, please specify general region).

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