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.MORE
Looking for individuals 6 months and older to participate in a speech and language research project. International project available in many languages!MORE
A KOOL announcement coming Friday, 1/17/2020! Location and date to be revealed!
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 […]READ MORE
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 […]READ MORE
This year, the KdVS Foundation welcomed the Speirs family into its global KdVS community. Andy and Virginia Speirs studied harp and cello performance at the University of Utah. Excited about the upcoming 2019 Patient Advocacy Summit in Park City, Utah, they organized and performed a harp/cello music concert to help raise funding and awareness for […]READ MORE