View all text of Subpart 1 [§ 287 - § 287a-4]
§ 287a–1. Office of Rare Diseases
(a) Establishment
(b) Duties
(1) In general
The Director of the Office shall carry out the following:
(A) The Director shall recommend an agenda for conducting and supporting research on rare diseases through the national research institutes and centers. The agenda shall provide for a broad range of research and education activities, including scientific workshops and symposia to identify research opportunities for rare diseases.
(B) The Director shall, with respect to rare diseases, promote coordination and cooperation among the national research institutes and centers and entities whose research is supported by such institutes.
(C) The Director, in collaboration with the directors of the other relevant institutes and centers of the National Institutes of Health, may enter into cooperative agreements with and make grants for regional centers of excellence on rare diseases in accordance with section 287a–2 of this title.
(D) The Director shall promote the sufficient allocation of the resources of the National Institutes of Health for conducting and supporting research on rare diseases.
(E) The Director shall promote and encourage the establishment of a centralized clearinghouse for rare and genetic disease information that will provide understandable information about these diseases to the public, medical professionals, patients and families.
(2) Principal advisor regarding orphan diseases
(c) Definition
(July 1, 1944, ch. 373, title IV, § 481, formerly § 404F, as added Pub. L. 107–280, § 3, Nov. 6, 2002, 116 Stat. 1989; amended Pub. L. 109–482, title I, §§ 103(b)(5), 104(b)(1)(B), Jan. 15, 2007, 120 Stat. 3687, 3693; renumbered § 481 and amended Pub. L. 112–74, div. F, title II, § 221(c)(2)(A), Dec. 23, 2011, 125 Stat. 1089.)