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Children’s National creates first-of-its-kind Rare Disease Institute

Children’s National Health System has announced the creation of the Children’s National Rare Disease Institute (CNRDI), a first-of-its-kind clinical research center focused exclusively on the care and treatment of children and adults with rare genetic disorders. Designated by the National Organization for Rare Disorders (NORD) as the first Center of Excellence for Clinical Care for Rare Diseases, the CNRDI will focus on developing care standards for patients, advancing research and developing new therapies to better treat rare diseases. The institute will be led by Marshall Summar, M.D., Chief of Genetics and Metabolism at Children’s National, and will collaborate with the NORD natural history/registry program, which was developed with input from the U.S. Food and Drug Administration and the National Institutes of Health to advance monitoring databases for patient outcomes and disease.