Section 26B-1-402 - Rare Disease Advisory Council Grant Program - Creation - Reporting(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.Amended by Chapter 250, 2024 General Session ,§ 8, eff. 5/1/2024.Renumbered from § 26-1-41 and amended by Chapter 305, 2023 General Session ,§ 57, eff. 5/3/2023.Added by Chapter 172, 2020 General Session ,§ 1, eff. 5/12/2020.