rare syndrome Archives - Koolen-de Vries Syndrome Foundation

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 […]

6 Oct

Keeping Our KdVS Community Safe Online

October is Cybersecurity Awareness Month — a perfect time to pause and make sure we’re all staying safe on the internet. The online world helps our Koolen-de Vries Syndrome (KdVS) […]

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.

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.

4 Oct

Podcast Feature: Wait, How Do You Spell That?

Our very own Board President Ashley Point was featured on an episode of the podcast “Wait, How Do You Spell That? A Rare Disease Podcast”. In the episode, Ashley shares […]