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. David Koolen

Join us on April 30, 2021 for a webinar with Dr. David Koolen. Check out the Event page to register!

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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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Visit our What is KdVS page for more videos!

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OUR LATEST

KDVS NEWS

By Alayna

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Pawsitive Warrior Spotlight

Kool Miranda along with her service dog, Natasha, was featured on Shane & Pepper Soy Candle Company’s monthly newsletter. Six year old Miranda received Natasha through 4 Paws for Ability, an organization that trains service dogs for veterans and children. Credit to: Shane & Pepper Candle Company (shaneandpeppercandleco.com)

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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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By Alayna

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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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CHECK OUT OUR UPCOMING EVENTS

23
May

Family Zoom Meet Up 5:00 PM

Join us for a virtual meet up of Kool families on May 23rd, 2021 at 5 pm ET. We had a great time on our first Zoom meeting and families attended from all over the world. Attendees will be divided into smaller break-out rooms to allow easier networking. We would love to meet you!
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14
Jul

2021 VIRTUAL KdVS Patient Advocacy Summit 12:00 AM

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