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 […]
READ MORENow 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 […]
READ MOREThe 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) […]
READ MOREThe 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 […]
READ MOREThe 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 […]
READ MOREIn 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 […]
READ MOREOn 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 years of research to Koolen-de Vries Syndrome and we couldn’t be more thankful or proud! Tune in to watch and support Anouk by visiting www.run.nl/aula/livestream.
READ MOREHi, 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 2 years old who also has KDVS, and Avary who is 4 months old. I received my Koolen-de Vries diagnosis at age 37, following the […]
READ MOREThe Koolen-de Vries Syndrome Foundation (KdVSF) is pleased to announce their Investigator Grant program. Through our Investigator Grant, KdVSF hopes to accelerate the development of therapeutics for the treatment of those living with Koolen-de Vries Syndrome (KdVS). This grant program is designed to facilitate investigations that will jumpstart research into KdVS and lay the groundwork […]
READ MOREFor Immediate ReleaseFebruary 10, 2022 Koolen-de Vries Syndrome Foundation Selects Clinical Fellow to Study the Use of Artificial Intelligence andSpeech Therapy in Assisting Clinicians in Diagnosing KdVS WILMINGTON, N.C. – The Koolen-de Vries Syndrome Foundation has awarded Lex Dingemans of Radboud University Medical Center in Nijmegen, Netherlands a two year clinical fellowship grant. Dingemans will […]
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