KdVS Awareness Day July 17th

Koolen-de Vries Syndrome (KdVS) is a rare genetic condition caused by a microdeletion on chromosome 17 or a variant in the KANSL1 gene. First identified in 2006, KdVS affects approximately 1 in 30,000 individuals worldwide. It is characterized by developmental delays, low muscle tone, intellectual disability, and distinctive facial features. Many individuals with KdVS also experience epilepsy, congenital heart defects, feeding challenges, and differences in behavior and learning. Because the condition can vary widely from person to person, diagnosis often requires genetic testing.

Though KdVS is rare, the impact on families is significant and growing awareness is critical. The Koolen-de Vries Syndrome Foundation (KdVSF) works to support families, fund research, and connect the global KdVS community. With only 18 years of research behind us, there’s still so much to learn about the long-term needs and care strategies for those living with KdVS. Greater visibility means earlier diagnosis, better resources, and stronger support for families navigating this complex journey.  For more information about KdVS, please visit www.kdvsfoundation.org.

Hashtags to use for KdVS Awareness Day: #KdVS #KoolendeVrieSyndrome #KdVSAwareness #KdVSAwarenessDay