December 03, 2025
KANSAS CITY, MO., Dec. 3, 2025 – The University of Kansas Health System, Children’s Mercy and the University of Kansas Medical Center announced they have been designated a NORD® Rare Disease Center of Excellence by the National Organization for Rare Disorders (NORD®).
The designation recognizes Children’s Mercy, the health system and medical center leadership in providing expert, multidisciplinary care and advancing research for the more than 30 million Americans living with rare diseases.
The NORD Rare Disease Centers of Excellence Network now includes 46 institutions across 28 states and Washington, D.C., all working together to shorten diagnostic journeys, expand access to care, train the next generation of rare disease experts, and accelerate groundbreaking research.
“We are honored to join this national network and collaborate with the health system, medical center and partners nationwide,” said Jay Vivian, PhD, Doctoral Research Faculty, Division of Clinical Genetics, Children’s Mercy, and Associate Director of the region’s only designated NORD Rare Disease Center of Excellence. “Rare disease research in pediatrics is about more than science—it’s about hope. Each discovery can change a child’s life and open doors to treatments that once seemed impossible. With a focus on rare conditions, we collaboratively tackle some of medicine’s most urgent challenges and give young patients the best chance for a healthier future.”
“The power of academic medicine lies in the strength of collaboration between medical research and clinical care, which brings the latest innovations and breakthroughs to patients and their families,” said Tammy Peterman, president of the Kansas City Division, The University of Kansas Health System. “Working with our partners at Children’s Mercy, we will continue to advance seamless care transitions for patients from childhood to adulthood.”
“Collaboration is key to medical advancements,” said Steve Stites, MD, Executive Vice Chancellor for the University of Kansas Medical Center and Chief Medical Officer for The University of Kansas Health System. “We are excited to partner with Children’s Mercy and across our academic medical center to continue strengthening research and advancements in rare diseases.”
The transition of care for adolescents with rare diseases into adulthood is a critical gap nationwide, and The University of Kansas Health System and the University of Kansas Medical Center serve as the regional destination for that next stage of care,” said Shobana Kubendran, MS, CGC, Manager of Genetic Counseling Services and Associate Director of the NORD Rare Disease Center of Excellence at The University of Kansas Health System. “As a regional center with multidisciplinary experts in genetics, cardiology, neurology, nephrology, and other adult specialties, we provide the expertise needed to diagnose and support individuals with rare and inherited conditions throughout adulthood.
As a NORD Rare Disease Center of Excellence, Children’s Mercy and The University of Kansas Health System will work with our rare disease families to promote existing and new clinical care programs, advance diagnostics and therapies leveraging programs such as the Genomic Answers for Kids and the Institute for Advancing Medical Innovation and enhance transition of care pathways.
“NORD is proud to welcome Children’s Mercy, The University of Kansas Health System and the University of Kansas Medical Center to our network of prestigious institutions driving breakthroughs and expanding the frontlines of rare disease care and research,” said Pamela K. Gavin, NORD Chief Executive Officer. “Together, we are ensuring that everyone living with a rare disease, regardless of condition or location, can receive a timely diagnosis, access expert care, and participate in cutting-edge research.”
Through a coordinated national network, Children’s Mercy, The University of Kansas Health System and the University of Kansas Medical Center are partnering with NORD and all NORD Rare Disease Centers of Excellence to scale the model of rare disease care and research, bridging clinical and specialty expertise gaps across institutions and state lines to deliver better outcomes for patients and their families.
Learn more about the NORD Rare Disease Centers of Excellence Network.
About The University of Kansas Health System
The University of Kansas Health System is the region's premier academic health system, providing a full range of care. The health system is affiliated with the University of Kansas Schools of Medicine, Nursing and Health Professions and their leading-edge research projects. In the Kansas City metro area, the health system offers more than 150 hospital and clinic locations, including a hospital in Kansas City, Kansas, a hospital at Indian Creek Campus in Overland Park, hospitals in Olathe, Miami County and Liberty, and two mental and behavioral health hospitals in the Kansas City area. The health system in Kansas City has received Magnet nursing designation four times in a row for the highest level of care and has ranked every year since 2007 on U.S. News & World Report's Best Hospitals lists (best in Kansas and Kansas City). It provides the region's most experienced, nationally verified burn center and Level I Trauma Center, as well as a leading transplant program in liver, pancreas, kidney, heart, and blood and marrow. The cancer program is part of The University of Kansas Cancer Center, one of 57 National Cancer Institute-designated comprehensive cancer centers. In addition to Kansas City metro locations, the health system has locations in Great Bend, Topeka and elsewhere.
About Children’s Mercy: Built for Kids. Powered by Purpose
Founded in 1897, Children’s Mercy is a nationally recognized, independent pediatric health system and a world leader in pediatric translational research committed to transforming the lives of children and families. With hospitals and specialty clinics across Missouri and Kansas, Children’s Mercy delivers world-class, family-centered care closer to home. As a nonprofit organization, Children’s Mercy reinvests every dollar donated into advancing pediatric medicine, supporting innovative research and training the next generation of pediatric specialists. With more than 800 pediatric experts, researchers and faculty we are dedicated to improving outcomes and creating a healthier future for all children. Children’s Mercy has earned repeated recognition from U.S. News & World Report as one of “America’s Best Children’s Hospitals” and is the first health system in Missouri or Kansas to receive six consecutive Magnet designations for nursing excellence. Thanks to generous philanthropic support and a strong volunteer community, Children’s Mercy provides hope, comfort and the prospect of brighter tomorrows to every child who comes through its doors. Visit Children’s Mercy and the Children’s Mercy Research Institute to learn more, and follow us on Facebook, LinkedIn, Instagram, Bluesky and YouTube for the latest news and videos.
About the University of Kansas Medical Center
The University of Kansas Medical Center’s mission is to educate exceptional health care professionals through a full range of undergraduate, graduate, professional, postdoctoral and continuing education programs in the schools of Medicine, Nursing and Health Professions. KU Medical Center also advances the health sciences through world-class research programs; provides compassionate and state-of-the-art patient care in an academic medical center environment; and works with communities in every Kansas county to improve the health of Kansans.