Sec. 6. National institutes of health
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Part B of title IV of the Public Health Service Act ( 42 U.S.C. 284 et seq. ) is amended by adding at the end the following: The Secretary shall establish and implement an HHT initiative to assist in coordinating activities to improve early detection, screening, and treatment of people who suffer from HHT. Such initiative shall focus on— advancing research on the causes, diagnosis, and treatment of HHT, including through the conduct or support of such research; and increasing physician and public awareness of HHT.
In carrying out this subsection, the Secretary shall consult with the Director of the National Institutes of Health and the Director of the Centers for Disease Control and Prevention. Not later than 60 days after the date of the enactment of this section, the Secretary, in consultation with the Director of the National Institutes of Health, shall establish a committee to be known as the HHT Coordinating Committee. The members of the Committee shall be appointed by the Secretary, in consultation with the Director of the National Institutes of Health, and shall consist of 12 individuals who are experts in HHT or arteriovenous malformation
(AVM)as follows: Four representatives of HHT Treatment Centers of Excellence designated under section 317U(c)(1). Four experts in vascular, molecular, or basic science. Four representatives of the National Institutes of Health. The Secretary shall designate the Chair of the Committee from among its members. In place of the 4 members otherwise required to be appointed under subparagraph (A)(i), the Secretary may appoint 4 experts in vascular, molecular, or basic science to serve as members of the Committee during the period preceding designation and establishment of HHT Treatment Centers of Excellence under section 317U. Not later than 30 days after the establishment of the Committee, the Secretary shall publish the names of the Chair and members of the Committee on the Website of the Department of Health and Human Services. The members of the Committee shall each be appointed for a 3-year term and, at the end of each such term, may be reappointed. A vacancy on the Committee shall be filled by the Secretary in the same manner in which the original appointment was made. The Committee shall develop and coordinate implementation of a plan to advance research and understanding of HHT by— conducting or supporting basic, translational, and clinical research on HHT across the relevant national research institutes, national centers, and offices of the National Institutes of Health, including the National Heart, Lung, and Blood Institute; the National Institute of Neurological Disorders and Stroke; the National Institutes of Diabetes and Digestive and Kidney Diseases; the Eunice Kennedy Shriver National Institute of Child Health and Human Development; the National Cancer Institute; and the Office of Rare Diseases; and conducting evaluations and making recommendations to the Secretary, the Director of the National Institutes of Health, and the Director of the National Cancer Institute regarding the prioritization and award of National Institutes of Health research grants relating to HHT, including with respect to grants for— expanding understanding of HHT through basic, translational, and clinical research on the cause, diagnosis, prevention, control, and treatment of HHT; training programs on HHT for scientists and health professionals; and HHT genetic testing research to improve the accuracy of genetic testing. In this section: The term Committee means the HHT Coordinating Committee established under subsection (b). The term HHT means hereditary hemorrhagic telangiectasia. .
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Sec. 6
National institutes of health
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