31 Jan

Chief Scientific Officer Announced

February 1, 2023 The Koolen-de Vries Syndrome Foundation is excited to announce that Dr. Anna Pfalzer, of Vanderbilt and COMBINEDBrain, has been hired as the Foundation’s first-ever Chief Scientific Officer. Dr. Pfalzer has become very familiar with Koolen-de Vries Syndrome while working on the COMBINEDBrain team that developed a KdVS Strategic Research Plan over the […]

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6 Jan

Commercial featuring KdVS

Did you know that Cox Communications recently filmed and released an online commercial featuring three individuals diagnosed with Koolen-de Vries Syndrome? Thank you to Cox Communications and the Kool families for helping bring awareness to our syndrome!

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21 Nov

One Kool Warrior’s Voice

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 time writing, but did you know she’s been published more than a dozen times? Looking for some inspiration? Peruse the following list of Bec’s writings […]

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15 Sep

Join the Contact Registry

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 there is no one database of diagnosed individuals anywhere in the world? We are often asked how many people are diagnosed with KdVS and the […]

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29 Jun

Help KdVS Foundation become Research Ready

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. By simply providing your and/or your KdVS individual’s information to the studies and organizations below, you can help the KdVS Foundation become RESEARCH READY. Being […]

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28 Jun

Research: Learn about RARE-X

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 share an introduction to the RARE-X platform. The KdVSF is very excited about the launch of the KdVS Data Collection Program (DCP). When families contribute […]

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15 Jun

KdVS Swimming Challenge – Spain

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 it on July 16th with the same features as last year; the morning swimming challenge from Cadiz to El Puerto de Santa Maria (3.2 miles) […]

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10 Jun

KdVS Foundation joins NORD

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 and the organizations that serve them. NORD, along with with its more than 300 patient organization members, is committed to the identification, treatment and cure […]

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1 Jun

Roadmap Project

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 Initiative on the ROADMAP project. Repurposing Of All Drugs, Mapping All Paths What is Drug Repurposing? Drug repurposing is a way to get treatments to […]

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24 Apr

It Takes a Village – A Rare Collaboration

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 called It Takes a Village on the first Saturday of the month. It Takes a Village will be a program full of useful, interesting, and […]

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