OU Health Joins New NORD Rare Disease Centers of Excellence Network

OU Health, Oklahoma’s comprehensive academic healthcare system, has been designated as a NORD Rare Disease Center of Excellence, joining an innovative national network of 31 medical centers dedicated to expanding access and advancing care and research for patients diagnosed with rare diseases.

The program is led by the National Organization for Rare Disorders (NORD), with a goal to foster the sharing of knowledge between experts across the country, connect patients to appropriate specialists regardless of disease or geography, and to improve the pace of progress in rare disease diagnosis, treatment and research.

“We are so excited to be selected as a NORD Center of Excellence. I have been involved with rare diseases for over 30 years, and I truly feel that it will take a village to advance of our knowledge and making meaningful impacts on rare disease studies and management. Therefore, having this designation and being able to work with other centers is extremely important. I also believe OU Health has a unique position to offer to this community,” said Anne Tsai, M.D., medical director of Clinical Genetics Services for OU Health and a professor in the OU College of Medicine, Department of Pediatrics.

People living with rare diseases frequently face challenges in finding a diagnosis and quality clinical care. In establishing the Centers of Excellence program, NORD has designated clinical centers across the United States that provide exceptional rare disease care and have demonstrated a deep commitment to serving patients and their families using a holistic, state-of-the-art approach. NORD selected each center in a competitive application process requiring evidence of staffing with experts across multiple specialties to meet the needs of patients, as well as significant contributions to rare disease patient education, physician training and research.

Any disease that affects fewer than 200,000 people in the United States is considered rare, according to the National Institutes of Health. There are over 7,000 rare diseases and 25 million to 30 million Americans estimated to be living with rare diseases. More than 90% of rare diseases lack a treatment that has been approved by the Food and Drug Administration.

OU Health offers testing, treatment and education for a wide variety of rare diseases. Because genetic diseases make up a large portion of rare diseases, the OU Health genetics team, working with colleagues in internal medicine, nephrology, urology, neurology, cardiology, gastroenterology, endocrinology and pediatrics, offers consultation in person or via telemedicine for birth defects, genetic conditions and metabolic conditions, as well as newborn screening.

Researchers from multiple disciplines at the OU Health Sciences Center, the academic partner of OU Health, conduct studies into various aspects of rare diseases. In addition, the OU College of Medicine offers robust education and training opportunities, including a master of science degree in genetic counseling, a medical genetics residency program, and clinical genetics laboratory training.

The NORD Rare Disease Centers of Excellence program is formulated to achieve better outcomes for all members of the rare disease community. This collaborative partnership strives to push the rare disease field forward by establishing and implementing new standards of care and innovating around new treatments, therapies and research.

“Right now, far too many rare diseases are without an established standard of care. The Centers for Excellence program will help set that standard — for patients, clinicians and medical centers alike,” said Ed Neilan, Chief Scientific and Medical Officer of NORD. “We are proud to announce OU Health as a NORD Rare Disease Center of Excellence and look forward to their many further contributions as we collectively seek to improve health equity, care and research to support all individuals with rare diseases.”