28 May

Children’s Book about KdVS

Exciting news!! “My Brother is a Kool Kid: A Children’s Book About Koolen-de Vries Syndrome for Siblings” is now available on Amazon! This heartwarming book follows the journey of siblings […]

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29 Feb

KdVS Advocate shares words on Rare Disease Day

Author and advocate Bec Tilley, diagnosed with KdVS, and mother to three children (two of whom are diagnosed with KdVS), shares the following words with the KdVS community on Rare […]

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29 Feb

32 Countries – Contact Registry

In honor of Rare Disease Day, we want to share this map illustrating just how diverse our Kool Community really is. There are Kool Individuals in 32 countries currently registered […]

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29 Feb

Rare Disease Day 2024

The KdVS Foundation is proud to support Rare Disease Day! “Bringing awareness to rare diseases is crucial as it sheds light on the specific challenges faced by those affected. From […]

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23 Feb

GenIDA Research Published

FREE Research Article Alert! GenIDA is an international patient registry for individuals diagnosed with intellectual disability, autism spectrum disorder, and/or epilepsy, which is based on an online questionnaire that is […]

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17 Feb

“I am number seventeen”

Alanna is 23 and is living with Koolen-de Vries Syndrome. She is affected in many ways including moderate intellectual disability, low muscle tone and anxiety. As a changemaker she hopes […]

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13 Feb

2024 Research Opportunities Press Release

For Immediate Release February 13, 2024 Koolen-de Vries Syndrome Foundation Funds Five Research Opportunities for 2024 WILMINGTON, N.C. – The Koolen-de Vries Syndrome (KdVS) Foundation is pleased to announce that […]

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12 Feb

International Epilepsy Day

International Epilepsy Day was started in 2015 by the International Bureau for Epilepsy and the International League Against Epilepsy as a platform for people with epilepsy and seizures to share […]

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5 Feb

2025 KdVSF Summit Announced

The KdVS Foundation is very excited to announce the 2025 KdVSF Patient Advocacy Summit will be held in… CHICAGO! In the coming months, we’ll be releasing more information about how […]

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25 Jan

Introduction to the UCLA CHAMPION Study

In a new study, UCLA researchers are looking to learn about motor, cognitive, and behavioral developmental in children with Koolen-de Vries Syndrome that are 1-5 years of age. The study […]

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