News Archives - Koolen-de Vries Syndrome Foundation

23 Jul

Koolen-de Vries Awareness Day

The Tilley Family’s Journey of Love, Resilience & Advocacy Editor’s Note: In recognition of Koolen-de Vries Awareness Day, we’re honored to share this personal story from one of our adult […]

1 Apr

Traveling to the Kool Klinic: A Guide for Families in the Koolen-de Vries Syndrome Community

Helpful travel tips and resources for families visiting the Kool Klinic from across the U.S. and around the world. For many families in the Koolen-de Vries Syndrome (KdVS) community, traveling […]

6 Feb

A Historic First: The Kool Klinic Opens This April

We’re thrilled that a milestone moment is being met for the Koolen-de Vries Syndrome Foundation (KdVSF) and our global community—the very first Kool Klinic is officially opening this April in […]

10 Sep

Service Pups: Loyal Companions in the Kool Kommunity

September is Service Dog Awareness Month; a perfect time to shine a spotlight on the incredible pups who play such an important role in the lives of individuals with Koolen-de […]

18 Aug

Back to School with Kool Confidence: Preparing Your Kool Individual for a Successful Year

The Back to School season can bring excitement, new opportunities and fresh routines. But for families of children with Koolen-de Vries Syndrome (KdVS), it also comes with unique challenges like, […]

17 Jul

Our Kool Story: From Diagnosis to Deep Joy

Becky is sharing her Koolen-de Vries Syndrome (KdVS) story for KdVS Awareness Day - because every story deserves to be seen, heard and celebrated.

16 Jul

Welcome to Summit 2025!

Today we kick off an inspiring week in Chicago/Oak Brook, IL with our Scientific Summit, bringing together a global network of researchers and clinicians working to advance understanding and treatment […]

22 May

Our Story of Embracing What Sets Us Apart

Nothing quite prepares you for the moment you’re told you and your children have a rare genetic syndrome. Koolen-de Vries syndrome wasn’t something I had ever heard of before, let […]

10 May

Patient Advocacy Summit 2025: Time to Register!

The time is here! The Koolen de Vries Patient Advocacy Summit will be held in Chicago, IL, USA from July 16th – 18th, 2025. There are so many sessions to […]

14 Mar

2024 Annual Report

Wow, what a year! Download our 2024 annual report to view a quick snapshot of initiatives we worked on throughout 2024.