Children’s Mercy and The University of Kansas Health System and the University of Kansas Medical Center Designated a NORD Rare Disease Center of Excellence
Children’s Mercy, The University of Kansas Health System 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."
Steve Stites, MD, Executive Vice Chancellor for the University of Kansas Medical Center and Chief Medical Officer for The University of Kansas Health System added, "Collaboration is key to medical advancements and 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.
“The NORD Center of Excellence designation for Children’s Mercy, The University of Kansas Health System and the University of Kansas Medical Center is more than an honor — it is a turning point for every rare disease family in Kansas City and the surrounding region," said Kelly Ranallo, Rare Disease Advocate/Founder of RareKC. “It brings greater hope, resources, and collaboration to the forefront, ensuring that no individual or family has to navigate a rare diagnosis alone. This milestone reinforces what we believe at RareKC: together, we can build a stronger, more connected future for all who are touched by rare conditions.”
To learn more about the NORD Rare Disease Centers of Excellence Network, visit https://rarediseases.org/center-of-excellence/.
To learn more about Rare Disease at Children's Mercy, visit https://www.childrensmercy.org/departments-and-clinics/rare-disease/.