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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Spinal Deformities Study

Looking for individuals to participate in a spinal deformities study with Dr. Koolen. This is a questionnaire open to those with and without spinal issues (such as scoliosis).

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2021 Summit - WE'VE GONE VIRTUAL!

Due to Covid-19 virus, we've decided to take the Patient Advocacy Summit and go VIRTUAL this summer! More details coming soon.

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OUR LATEST

KDVS NEWS

By Alayna

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WBTV’s Molly Grantham features Elle

November 30, 2020 Charlotte based charity Bee Mighty raises money and hope for preemies. Elle, a twin, was not only born prematurely but also was diagnosed with Koolen-de Vries Syndrome. Read Molly Grantham’s social media post here. Read more of Elle’s story, as written by her mother, Christina, in her blog here.

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Meet Tom Kelsall, an amazing cyclist

Tom Kelsall, a teenager diagnosed with Koolen-de Vries Syndrome and Type 1 diabetes, has an amazing and inspirational story to tell. Remember his name and cheer him on as he reaches for his dreams of winning a gold at the Special Olympics. Read the full story on The Guardian.

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By Alayna

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Fall/Winter 2020 Newsletter

The Fall/Winter 2020 Koolen-de Vries Syndrome Foundation newsletter was emailed on December 14, 2020. Did you miss it? Not to worry! Features include: Meet our new Board President Feature article on Constipation from Medical Advisory Board Member and Kool Dad, Dr. Russell Zwiener Board Member Spotlight Kool Kampaign update Patient Advocacy Summit update

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CHECK OUT OUR UPCOMING EVENTS

15
Jul

2021 VIRTUAL KdVS Patient Advocacy Summit 12:00 AM

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