Peter Saltonstall, President and Chief Executive Officer of the National Organization for Rare Disorders (NORD), discusses the organization’s new centers of excellence  (COEs) and why now was the best time to start this initiative.

As stated by Saltonstall,  NORD (and the Orphan Drug Act of 1983) is in its 40th year. To celebrate that milestone, the organization wanted to better connect research medical centers across the country that have clinical researchers who are highly trained on a specific disease or set of diseases. Saltonstall referred to this approach as a “NORD Centers of Excellence Network”.

To date, NORD has connected 31 research centers across the United States. NORD launched this program on November 4th, 2021 and had their first in person meeting at their Rare Disease Summit in October of 2022. With this program, medical centers are now able to share their information and research more efficiently. They now have all of these centers collectively contributing to the Rare Diseases Center of Excellence Intranet and cataloging the information in an effort to build one of the largest clinical research networks in the country for rare diseases.

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