Page:United States Statutes at Large Volume 116 Part 3.djvu/398

 116 STAT. 1990 PUBLIC LAW 107-280—NOV. 6, 2002 ' "(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. Reports. "(F) The Director shall biennially prepare a report that describes the research and education activities on rare diseases being conducted or supported through the national research instituteife and centers, and that identifies particular projects or types of projects that should in the future be conducted or supported by the national research institutes and centers or other entities in the field of research on rare diseases. Reports. "(G) The Director shall prepare the NIH Director's annual report to Congress on rare disease research conducted by or supported through the national research institutes and centers. " (2) PRINCIPAL ADVISOR REGARDING ORPHAN DISEASES.— With respect to rare diseases, the Director shall serve as the principal advisor to the Director of NIH and shall provide advice to other relevant agencies. The Director shall provide liaison with national and international patient, health and scientific organizations concerned with rare diseases. "(c) DEFINITION.— For purposes of this section, the term 'rare disease' means any disease or condition that affects less than 200,000 persons in the United States. "(d) AUTHORIZATION OF APPROPRIATIONS. — For the purpose of carrying out this section, there are authorized to be appropriated such sums as already have been appropriated for fiscal year 2002, and $4,000,000 for each of the fiscal years 2003 through 2006.". SEC. 4. RARE DISEASE REGIONAL CENTERS OF EXCELLENCE. Title IV of the Public Health Service Act (42 U.S.C. 281 et seq.), as amended by section 3, is further amended by inserting after section 404F the following: " RA RE D ISEASE REGIONAL CENTERS OF EXCELLENCE 42 USC 283i. "SEC. 404G. (a) COOPERATIVE AGREEMENTS AND GRANTS.— "(1) IN GENERAL.— The Director of the Office of Rare Diseases (in this section referred to as 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 to public or private nonprofit entities to pay all or part of the cost of planning, establishing, or strengthening, and providing basic operating support for regional centers of excellence for clinical research into, training in, and demonstration of diagnostic, prevention, control, and treatment methods for rare diseases. "(2) POLICIES. —^A cooperative agreement or grant under paragraph (1) shall be entered into in accordance with policies established by the Director of NIH. "(b) COORDINATION WITH OTHER INSTITUTES. —The Director shall coordinate the activities under this section with similar activities conducted by other national research institutes, centers and

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