Bec Tilley has a unique voice in the Koolen-de Vries Syndrome community as both a Kool Warrior herself and a mother to two very Kool children! Bec enjoys spending her […]
The Koolen-de Vries Syndrome Foundation is passionate about preparing our community to be “research ready”. One critical step is having a contact registry of diagnosed families. Did you know that […]
Do you love a discount? Do you love KdVS gear? What about helping further important research? If yes, read on for a really cool way YOU can make a difference. […]
Now available on YouTube, catch up on the RARE-X Introduction webinar, held June 23, 2022. In this webinar, members of the Koolen-de Vries Syndrome Foundation and Megan O’Boyle of RARE-X […]
The KdVS Foundation is so grateful for individuals like María Luisa & Gonzalo. After last year’s success they’re launching the second edition of the Swimming Challenge! They expect to host […]
The Koolen-de Vries Syndrome Foundation is now a member of the National Organization for Rare Disorders or NORD! NORD is a patient advocacy organization dedicated to individuals with rare diseases […]
The Koolen-de Vries Syndrome Foundation is excited to announce that we are one of the 147 organizations which have partnered with the Castleman Disease Collaborative Network and the Chan Zuckerberg […]
In an effort to leverage resources and take advantage of synergies, the patient advocacy groups IDefine, Koolen-de Vries Syndrome Foundation, and SETBP1 Society are teaming up to offer a webinar series […]
On Wednesday, March 21, 2022, Anouk Verboven will be defending her thesis titled “Transcriptomic and Functional Phenotyping of Human Neurons: Towards a Therapy for Koolen-de Vries Syndrome.” She’s dedicated her […]
A Mama’s Heart – Showing the World Differences are Worth Celebrating
Hi, my name is Becky. I’m from the UK. I am a proud wife to my husband Carl and mother to my three beautiful children, Isabella, age 3, Josh, nearly […]
