Koolen-de Vries Syndrome Foundation

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

Koolen-de Vries Syndrome was first identified in 2006 and thus is a relatively ``new`` syndrome. Current published literature describing the syndrome is based on small numbers of individuals. Research into the syndrome is still on-going and there is great need for parents/caregivers to get involved.