Supporting Families with Koolen-de Vries Syndrome Mission:
To educate, increase awareness and promote research for the support and enrichment of individuals living with Koolen-de Vries Syndrome and their families.

2014 USA Gathering

What a success!

Newsletter Archive

Are you signed up for the Supporting Families with Koolen-de Vries Syndrome newsletter? Sign up at the top of the page! Find past editions by clicking the "Read More" button below.

Medical Advisory Board

We are pleased to announce the formation of a Medical Advisory Board. Thank you to Dr. Koolen, Dr. de Vries and Dr. Mefford for joining our team! Additional details to follow!