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 KDVS Patient Advocacy Summit

Join us July 15-18, 2021 in Orlando, Florida for the Koolen-de Vries Syndrome Patient Advocacy Summit. Hotel rooms can be booked now and Summit registration coming in October 2020!

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Visit our What is KdVS page for more videos!

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