Priya Kishnani, MD, Chief, Division of Medical Genetics and Professor of Pediatrics at the Duke University School of Medicine, discusses the National Organization for Rare Disorders’s (NORD) Rare Disease Centers of Excellence, of which the Duke Health Rare Disease Center is one.
As Dr. Kishnani explains, there are currently 31 NORD Rare Disease Centers of Excellence across the United States. The primary goal for establishing this network was to advance care and expand access for rare disease patients. The second goal was to enable rare disease experts to work collaboratively, which will hopefully lead to faster progress in terms of diagnoses, treatments, and development of guidelines and new therapies. Many of the Centers of Excellence specialize in particular rare disease areas; for example, at the Duke Health Rare Disease Center, they are focused on glycogen storage and lysosomal storage disorders. Being part of NORD’s network ultimately means patients across the country with these disorders can be more quickly connected with the researchers at Duke. This would not only benefit individual patients, but the larger community as well as Duke continues to learn more about glycogen storage and lysosomal storage disorders and relays that information to other Centers of Excellence.
To learn more about the Centers of Excellence, click here.
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