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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OUR LATEST

KDVS NEWS

By Alayna

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Koolen-de Vries Syndrome Foundation Announces a New President of the Board of Directors

September 3, 2020 Contacts: Ashley Point, 704/342-1445, ashley@kdvsfoundation.org Patty Tiberg, 817/905-1360, patty@kdvsfoundation.org Wilmington, NC-The Koolen-de Vries Syndrome Foundation (KdVSF), whose mission is to educate, increase awareness and promote research for the support and enrichment of individuals living with Koolen-de Vries Syndrome (KdVS) and their families, announced today the election of Ashley Point to the role […]

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KdVS Foundation attends Global Genes Summit

Board Member Andy Speirs and his wife, Virginia, represented Koolen-de Vries Syndrome Foundation at the Global Genes Patient Advocacy Summit. They were able to network and make great contacts in the rare disease community while sharing information about KdVS and a link to our new video (https://youtu.be/6mqYyJcQY50). We had a wonderful time attending the 2019 […]

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By Alayna

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By Alayna

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2019 RARE Patient Impact Grant

The Koolen-de Vries Syndrome Foundation is proud to have been selected from among some 200 other applicants to receive the 2019 RARE Patient Impact Grant from Global Genes. Launched in 2015, this grant program directs financial support to RARE Foundation Alliance partner organizations and patient advocacy groups to provide education, resources and support to rare […]

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2021 KdVS Patient Advocacy Summit 12:00 AM

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