42 U.S.C. § 287a–1 — Office of Rare Diseases

(a) Establishment. The Center creates an office called the Office of Rare Diseases (the Office). The Center's Director appoints someone to run it as the Office's Director. (b) Duties. (1) The Office's Director must: (A) recommend a plan for research on rare diseases across NIH's research institutes and centers, covering a wide range of research and education activities, including scientific workshops and seminars to spot research opportunities; (B) help NIH's institutes and centers, and the outside groups they fund, coordinate and cooperate on rare-disease work; (C) team up with the directors of other relevant NIH institutes and centers to make cooperative agreements and grants for regional rare-disease centers of excellence, under section 287a–2; (D) push for NIH to give enough resources to rare-disease research; and (E) promote and encourage a central clearinghouse for rare and genetic disease information, written so the public, medical professionals, patients, and families can understand it. (2) On rare diseases, the Office's Director is the main advisor to NIH's Director and also advises other relevant agencies. The Director also serves as the liaison to national and international patient, health, and scientific groups focused on rare diseases. (c) Definition. In this section, "rare disease" means any disease or condition affecting fewer than 200,000 people in the United States.