OU Health was designated as a Rare Disease Center of Excellence — a national network of 31 medical centers dedicated to expanding access and advancing care for patients with rare ailments, according to a Thursday OU Health press release.
The National Organization for Rare Disorders leads the program, according to the release, which shares knowledge between experts across the country, connects patients to appropriate specialists despite disease or geography and improves progress in rare disease diagnosis, treatment and research.
Anne Tsai, medical director of Clinical Genetics Services for OU Health and an OU pediatric department professor, said in the release that OU Health is “so excited” to be a part of the 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 ... our knowledge and (make) meaningful impacts on rare disease studies and management,” Tsai said in the release. “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.”
The National Institutes of Health wrote any disease affecting fewer than 200,000 people in the United States is considered rare. There are around 7,000 rare diseases affecting 25 to 30 million Americans. More than 90 percent of rare diseases lack a treatment approved by the Food and Drug Administration.
By establishing the Centers of Excellence program, NORD provides clinical centers across the United States for rare disease care, according to the release. Each center was selected in a competitive application process requiring evidence of staffing multiple experts to meet the needs of patients and significant contributions to rare disease patient education, physician training and research.
OU Health offers testing, treatment and education for a wide variety of rare diseases, according to the release. The OU Health genetics team, which plays a large role in treating rare genetic diseases, works with colleagues in internal medicine, nephrology, urology, neurology, cardiology, gastroenterology, endocrinology and pediatrics, offers consultation in person or by telemedicine for birth defects, genetic conditions, metabolic conditions and newborn screening.
The release read that the partnership between NORD and OU Health strives to push the rare disease field forward by implementing new standards of care and innovating new treatments, therapies and research.
Ed Neilan, chief scientific and medical officer of NORD, said in the release there are many rare diseases without a standard for care and he hopes the Centers for Excellence program will help set such a standard.
“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,” Neilan said in the release.
