(1) As used in this section: (a) "Council" means the Rare Disease Advisory Council described in Subsection (3). (b) "Grantee" means the recipient of a grant under this section to operate the program. (c) "Rare disease" means a disease that affects fewer than 200,000 individuals in the United States. (2) (a) Within legislative appropriations, the department shall issue a request for proposals for a grant to administer the provisions of this section. (b) The department may issue a grant under this section if the grantee agrees to: (i) convene the council in accordance with Subsection (3); (ii) provide staff and other administrative support to the council; and (iii) in coordination with the department, report to the Legislature in accordance with Subsection (4). (3) The Rare Disease Advisory Council convened by the grantee shall: (a) advise the Legislature and state agencies on providing services and care to individuals with a rare disease; (b) make recommendations to the Legislature and state agencies on improving access to treatment and services provided to individuals with a rare disease; (c) identify best practices to improve the care and treatment of individuals in the state with a rare disease; (d) meet at least two times in each calendar year; and (e) be composed of members identified by the department, including at least the following individuals: (i) a representative from the department; (ii) researchers and physicians who specialize in rare diseases, including at least one representative from the University of Utah; (iii) two individuals who have a rare disease or are the parent or caregiver of an individual with a rare disease; and (iv) two representatives from one or more rare disease patient organizations that operate in the state. (4) Before November 30 of every odd-numbered year, the grantee shall report to the Health and Human Services Interim Committee on: (a) the activities of the grantee and the council; and (b) recommendations and best practices regarding the ongoing needs of individuals in the state with a rare disease.
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