koolen-de Vries Archives - Koolen-de Vries Syndrome Foundation

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.

9 Nov

Study Opportunity with the COMBINEDBrain Team

Calling all Kool Adults, Caregivers, Teachers and Healthcare providers! We’re asking for members of our community to meet with our friends over at Medical College of Wisconsin (MCW) who has […]

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 […]

2 Oct

¿Qué es el síndrome de Koolen-de Vries?

Made possible by Koolen-de Vries Syndrome Foundation Board Member Maria Luisa Valentin de Solis, the Foundation has translated its latest KdVS “About” video into Spanish. This is a great resource […]