New designation acknowledges efforts in research and care of those with rare diseases
The University of Kansas Medical Center, Children’s Mercy and The University of Kansas Health System have been designated as a NORD Rare Disease Center of Excellence.
The University of Kansas Medical Center, Children’s Mercy and The University of Kansas Health System announced today that they have collectively been designated a NORD Rare Disease Center of Excellence by the National Organization for Rare Disorders (NORD).
The designation recognizes the organizations’ 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.
“Collaboration is key to medical advancements,” said Steve Stites, M.D., executive vice chancellor for KU 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.”
NORD announced today the addition of seven such academic medical centers across the nation, also including those at Cedars-Sinai, Rutgers and the University of California-Davis.
expert, multidisciplinary care and advancing research
for the more than 30 million Americans living with
rare diseases.
“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 KU 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.
executive vice chancellor
for the University of
Kansas Medical Center
and chief medical officer
for The University of
Kansas Health System
“We are honored to join this national network and collaborate with the health system, medical center and partners nationwide,” said Jay Vivian, Ph.D., 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.”
Each center undergoes NORD’s rigorous designation process, meeting benchmarks for multidisciplinary staffing, patient education, physician training and research engagement.
“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, M.S., FAAN, 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.”