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 […]
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 […]
Dr. Herault is a Professor at the Institut de génétique et de biologie moléculaire et cellulaire. Dr. Herault established the first mouse models of KdVS – creating a model for […]
The Koolen-de Vries France group marched through the streets of the capital with KdVS signs to help raise awareness. The march was organized by France’s Rare Disease Alliance or “Alliance […]
We are excited to announce the awarding of our 3rd of 5 Investigator Grants to Dr. Helen Willsey, PhD of the University of California, San Francisco! Her project is titled, […]
Dr. Wright is a post-doctoral researcher at the Murdoch Children’s Research Institute who will be investigating whether select small molecule compounds can correct molecular deficits in KdVS cell models. Many […]
Dr. Victor Faundez, MD, PhD is a Professor at Emory University in the Department of Cell Biology. He has developed an expertise in discovering biomarkers of rare neurological diseases by […]
The Point family was recently featured in the Rare Revolution Magazine. The film Davis Out of the Unknown was created to highlight their family as they fight to find a […]
Publication alert! According to research involving speech and KdVS individuals, stuttering was described in 36/47 (76.6%) verbal KdVS participants and followed a unique trajectory of late onset and fluctuating presence. […]
