Olaf Bodamer, MD, PhD, Associate Chief of Genetics and Genomics at Boston Children’s Hospital, discusses how the National Organization for Rare Disorders’ (NORD) Rare Disease Centers of Excellence addresses unmet needs of the rare disease community.
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 Boston Children’s Genetics and Genomics, they are focused on 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 Boston Children’s. This would not only benefit individual patients, but the larger community as well as Boston Children’s continues to learn more about lysosomal storage disorders and relays that information to other Centers of Excellence.
As Dr. Bodamer explains, one of the goals of the Centers of Excellence is to address the unmet needs of rare disease patients (e.g., long diagnostic journeys, lack of approved therapies, and lack of standardized and coordinated management.)
To learn more about the Centers of Excellence, click here.
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