Koolen-de Vries Syndrome Foundation

Patient Advocacy Summit

The KdVS Summit brings together families, caregivers, clinicians, researchers and advocates from around the world to connect, learn and move the Koolen-de Vries syndrome community forward. This bi-annual gathering offers a unique opportunity to share the latest research updates, hear directly from experts, and build meaningful relationships with others who truly understand the KdVS journey. Together, we create space for education, collaboration and hope grounded in science and strengthened by community.

Patient Advocacy Summit

For three days, the KdVS Foundation hosts a Summit for families in the KdVS community. Attendees have the opportunity to listen and take part of a variety of educational sessions and KdVS community events.

Scientific Summit

One of the three days of summit is dedicated to an all-day Scientific Summit hosted by the KdVS Foundation. This event is open to KdVS researchers who join together to discuss current and future research, to network and to collaborate.

Sponsorship Information

Support and partnerships are vital to helping the KdVS Foundation achieve our mission and continue to host future summits. We are happy to customize packages for all donations, please contact Ashley at [email protected] for more information about sponsorships.

Patient Advocacy Summit Pages

Denver 2027

Chicago 2025

Park City 2019

2019 KdVS Patient Advocacy Summit Logo with Title Park City and picture of building mountains

Europe 2026

Orlando 2023

Memphis 2017

Summit Picture Gallery

  • koolen-de Vries syndrome friends and family
  • koolen-de vries syndrome families
  • boy with Koolen-de Vries Syndrome eating popsicle
  • Dad and sister of a child with KdVS
  • girl with KdVS eating ice cream with brother
  • Katrin Linda presenting KdVS research at Patient Advocacy Summit to attendees
  • infant with Koolen-de Vries Syndrome and grandma
  • Koolen-de Vries Syndrome mothers
  • KdVS Family
  • Koolen-de Vries Syndrome family
  • Koolen-de Vries Syndrome family
  • Koolen-de Vries Syndrome mom and son smiling and giving thumbs up
  • Two girls with Koolen-de Vries Syndrome hugging
  • Son with Koolen-de Vries Syndrome hugging mother
  • Daughter with koolen-de Vries Syndrome and mom smiling
  • Koolen-de Vries Syndrome Family
  • Young adult male diagnosed with Koolen-de Vries Syndrome weaing a "I'm too KOOL for this shirt" shirt
  • 2016 Gathering of Koolen-de Vries Syndrome Families in Columbus, Ohio