Neurogenomics Program
Children’s Mercy is home to the Genomic Medicine Center, among the first of its kind with a pediatric focus, providing clinical genomic services. Through specialized clinics and groundbreaking research, our neurologists will provide exceptional and compassionate care for your child.
NORD Rare Disease Center of Excellence
A major milestone for our rare disease program was the designation of Children’s Mercy Kansas City, The University of Kansas Medical Center, and The University of Kansas Health System as a NORD® Rare Disease Center of Excellence by the National Organization for Rare Disorders in December 2025.
The designation recognizes the institution’s leadership in multidisciplinary rare disease care and research and places our program within a national network of 46 institutions across 28 states and Washington, D.C. The NORD national directory identifies J.B. Le Pichon, MD, PhD, together with Bryce Heese, MD, Andreas Schmid, MD, and John Serfas, MD, as directors of the Center, with Jay Vivian, PhD, and Shobana Kubendran, MBBS, MS, CGC, serving as associate directors.
Conditions and clinics
- Comprehensive Dravet Clinic
- Rett Syndrome
- Angelman Syndrome
- Leukodystrophies
- Mitochondrial disorders
- Neurocutaneous syndromes (Tuberous Sclerosis and Neurofibromatosis Clinic)
- Rare genetic disorders
Research
We are actively enrolling patients for research studies in patients with Angelman Syndrome. Learn more about this study.
Angelman Syndrome: Maddie's Story
When Maddie was diagnosed with Angelman syndrome, it changed the course of her family’s life forever, setting them on the path to help launch the Angelman Syndrome Clinic at Children’s Mercy.
Dravet Syndrome: Tenley's Story
Tenley is a people-loving 10-year-old who adores roller coasters, swimming and cheerleading. She also also lives with Dravet Syndrome, a rare form of severe epilepsy with symptoms that affect almost every system in the body. With the help of the Epilepsy Center, Tenley has gone from experiencing hundreds of seizures a day to a life full of the things she loves.
