New rare diagnosis 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) […]

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 […]

30 Sep

2024 Family Carer of the Year

Meet Laura Egan, the WINNER in the Westmeath independent community and sports awards for the 2024 Family Carer of the Year award. When her daughter Alanna was diagnosed with Koolen-de […]

16 Sep

KdVSF Connect – Get Excited for Summit!

Are you attending the Koolen-de Vries Syndrome Foundation’s Patient Advocacy Summit in Chicago? This special KdVSF Connect is a chance to ask any of your last-minute Summit questions! The event […]