“Stronger together for everyone with Koolen-de Vries syndrome.”
Living with Koolen-de Vries syndrome (KdVS) often brings questions and challenges. Our foundation connects families, provides reliable information and creates a place for recognition and support.
We also work to increase knowledge and awareness of KdVS among healthcare providers, education and other people involved. We also stimulate research to further improve care and treatment options.
Together we build a strong community and better support for everyone affected by KdVS.
Koolen-de Vries syndrome
Read plain-language information about what KdVS is, which development, health and physical features can occur, and why every child with this syndrome is unique.
Families and caregivers
Support with organising care, working with professionals, school and local authorities, applications, and transitions to new settings or adult care.
Research
View current KdVS research, including natural history, recognition and diagnostics, cell models, and research into adults with the syndrome.