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.
MOREInterested in RESEARCH!? Check out our Strategic Research Plan from December of 2022.
RESEARCHRegistration for the Koolen-de Vries Syndrome Foundation's Patient Advocacy Summit is now open! See you in July!
REGISTRATIONKoolen-de Vries Syndrome Foundation maintains a confidential database of KdVS families from around the world. This database allows us to help families make connections in their geographic areas, understand where the KdVS community resides and share with our Medical Advisory Board the number of individuals registered. If you have any questions, please send us a message through ``Contact Us``.