Koolen-de Vries Syndrome Foundation and Children’s Hospital Colorado Launch First U.S. Multidisciplinary Clinic, titled the Kool Klinic

WILMINGTON, NC – The Koolen-de Vries Syndrome Foundation (KdVSF) is proud to announce the official opening of its first-ever multidisciplinary clinic, called the Kool Klinic at Children’s Hospital Colorado in Aurora, Colorado, beginning April 2026. This important partnership brings coordinated, comprehensive care to individuals affected by Koolen-de Vries Syndrome (KdVS), offering families access to a full team of specialists in a single clinic experience. 

KdVS is a rare genetic condition that affects neurodevelopment and physical health, requiring ongoing care from a variety of medical and therapeutic specialists. The Kool Klinic model is designed to eliminate the burden of navigating multiple separate appointments by enabling families to meet with neurologists, neuropsychologists, genetic counselors, therapy teams and more all in one location.

“The Kool Klinic represents a transformative step forward in care for individuals with Koolen-de Vries Syndrome,” said Dr. Megan Abbott, Principal Investigator, Pediatric Neurologist and Epileptologist of the Kool Klinic at Children’s Hospital Colorado. “By bringing together a multidisciplinary team in one coordinated setting, we are able to truly understand each patient’s needs, collaborate in real time, and provide families with clearer guidance, actionable recommendations, and compassionate support.”  The two-day, multidisciplinary clinic provides in-depth evaluations for up to four patients per quarter, with coordinated scheduling led by a dedicated nurse coordinator. 

Opening next month, the Kool Klinic will operate for an initial three-year period, serving individuals of all ages with services covered by insurance. “This is a huge step forward for our families—a true dream come true. We’re thrilled to have all of our care in one place. With the guidance of these experts, families will gain the knowledge and confidence to provide the very best care for their loved one with KdVS,” said Ashley Point, KdVS Foundation President.  

About the Koolen-de Vries Syndrome Foundation
The Koolen-de Vries Syndrome Foundation is dedicated to empowering individuals affected by KdVS and their families through education, awareness, research and clinical initiatives. The Foundation supports global efforts to improve understanding and treatment of this rare genetic syndrome.

If you would like to learn more about the Koolen-de Vries Syndrome Foundation, please contact Ashley Point at [email protected].