Contact Registry

Koolen-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.

Koolen-de Vries Syndrome was only identified in 2006. What started out as just a few diagnosed individuals is starting to grow into a much larger community. If you have any questions, please send us a message through ``Contact Us``.