The National Organization for Rare Disorders (NORD) provides new designation to medical centers to define standards for high-quality specialized care for rare disease patients. UNC Children’s is home to one of the centers, led by Cynthia Powell, MD.
The National Organization for Rare Disorders (NORD) announced 31 Rare Disease Centers of Excellence across the United States, establishing a unique network of medical centers, clinics, and institutions to advance care and expand access for rare disease patients.
The program is being led by NORD to promote outstanding treatment for rare disease patients regardless of disease or geography, to elevate collaboration, to improve standards of care, to advance research, and to increase awareness about rare diseases in the broader medical and patient communities.
“UNC Children’s and the UNC Health system have a long tradition of diagnosing and caring for patients with rare diseases in North Carolina and beyond,” said Cynthia Powell, MD, professor of pediatrics and genetics at the UNC School of Medicine. “Many of our faculty are involved in cutting-edge research and clinical trials for these conditions. Our NORD recognition reflects the outstanding efforts of many individuals, not only our physicians, but also our genetic counselors, nurses, dietitians, advanced practice providers, social workers and support staff who help patients on a daily basis.”
Dr. Powell, who is a member of the UNC Children’s Research Institute, leads the NORD Rare Disease Center of Excellence at UNC Children’s, and the UNC center includes other leaders in the field including Julie Blatt, MD, Margaret Leigh, MD, Joseph Muenzer, MD, PhD, Jim Hagood, MD, Arti Pandya, MD, Eveline Wu, MD, and Suzanne Kennedy, PhD, under the leadership of the UNC Department of Pediatrics Chair Stephanie Davis, MD.
The average rare disease diagnosis can take six years and require up to 12 specialists and multiple medical tests. By designating and establishing a network of specialized centers and experts, NORD is bringing together leaders in the field from across the country to reduce the time to diagnosis and improve the availability and coordination of multi-specialty clinical care. These Centers of Excellence will strive to push the rare disease field forward by collaborating to develop new care guidelines, improve medical and family education, create safe and effective referral pathways, and innovate around new treatments, therapies, and research.
“Our belief is that the Center of Excellence program is the next big stride forward for rare disease treatment and patients – to improve health equity and create critical new connections to resources and specialists across our nation,” said Ed Neilan, Chief Scientific and Medical Officer, NORD. “NORD is committed to breaking down silos and building bridges so that people living with a rare disease can achieve their best health and well-being.”
Each Center for Excellence was selected by NORD in a competitive application process requiring evidence of staffing with experts across multiple specialties to meet the needs of rare disease patients and significant contributions to rare disease patient education, physician training, and research. The NORD Rare Disease Centers of Excellence program is formulated to achieve better outcomes for all members of the rare disease community.
For further information and the full list of NORD designated Rare Disease Centers of Excellence, read more at the NORD website.
UNC contact: Mark Derewicz