Events
Our foundation organizes activities and gatherings to bring people together, share knowledge, and support our mission.
On this page, you’ll find events related to Koolen-de Vries syndrome, including family gatherings, webinars hosted by healthcare professionals, and research updates.
What you will find here
- Family meetups and activities
- Awareness and fundraising events
- Webinars and presentations by researchers and clinicians
- Conferences and rare disease events
Upcoming Events
Fonkeldag – Saturday, October 10
Registration for the KdVS Fonkeldag – A Day to Remember!
We have something very special to share…
The KdVS Foundation has been invited to take part in a Sparkle Day at the Fonkelhuis, located at Ouwehands Zoo.
Date: Saturday, October 10
This special day is for children and adults with Koolen-de Vries Syndrome, accompanied by one parent or caregiver.
The day begins at 10:00 AM with a warm welcome at the Fonkelhuis, where coffee, tea, and refreshments will be available. Together with dedicated volunteers, participants will enjoy fun activities such as baking cookies and arts and crafts.
At around 12:30 PM, lunch will be served. Afterwards, families can explore the zoo together. Throughout the day, the Fonkelhuis will remain available as a quiet and safe place to relax whenever needed.
We will finish the day together at approximately 4:00 PM.
Good to know
- Participation is free of charge.
- Each child or adult with KdVS may be accompanied by one parent or caregiver.
- Only 24 places are available.
As we expect a great deal of interest, participants will be selected by random draw.
The draw will take place on July 1.
Registration is available via the online form.
For more information about the Fonkelhuis and Fonkeldagen, please visit the Fonkel website.
Organising Your Own Event?
If you are organizing an event and want it listed here, please contact us with the details below:
- Event title and short description
- Date, time, and time zone
- Location or online link
- Intended audience (families, clinicians, researchers, etc.)
- Registration link and deadline (if any)
- Accessibility notes (captions, language, recordings)
Visit our Facebook page for the latest overview of all our activities and events.
Stichting Koolen-de Vries syndroom | Facebook
Activities in 2026
Easter Cookie Bake Sale 2026
We are incredibly proud of all our bakers who baked and sold delicious treats for Easter!
With the help of three families and around six bakers, we raised an amazing €1,700 for the foundation.
Thanks to this wonderful fundraising effort, we will be able to support many valuable initiatives for the KdVS community in the coming year.
A heartfelt thank you to all of our bakers for their hard work, and to everyone who bought the treats or made a donation. Your support truly makes a difference!
Koolen-de Vries Syndrome Family Day – January 24, 2026
On January 24, 2026, we organized our Koolen-de Vries Syndrome Family Day at the Eemlandhoeve.
It was wonderful to meet one another, share experiences, and see the children having so much fun together.
We were delighted to welcome Dr. Koolen, Dr. De Vries, Dr. Geelen, and physician-researcher Jolijn Verseput from Radboud University Medical Center, who shared valuable information about Koolen-de Vries syndrome and answered questions from families.
We ended the day with a lovely walk around the farm, visiting the chickens and cows together.
A special thank you to ZeldSamen and Stichting Koolen-de Vries syndroom for sponsoring this wonderful day. Their support made this event possible.
We Did It! Charity Run for Stichting Koolen-de Vries Syndroom
On December 31, 2025, we successfully completed the 10 km New Year’s Eve Run!
Although we didn’t finish first, we achieved something even more meaningful: for the very first time, we took part in a sponsored charity run in support of Stichting Koolen-de Vries syndroom. It was an important first step in raising awareness of this rare syndrome.
A huge round of applause also goes to our amazing children, who proudly completed the Kids Run wearing the T-shirts. We are so proud of every one of them!
We look forward to continuing our fundraising runs for the foundation in 2026.
Once again, a heartfelt thank you to all our donors for their generous support!
