§ 26B-1-402 — Rare Disease Advisory Council Grant Program -- Creation -- Reporting.

Utah § 26B-1-402

• Jurisdiction: Utah
• Title 26B: Utah Health and Human Services Code
• Ch. 26B-1: Department of Health and Human Services
• Part 26B-1-4: Boards, Commissions, Councils, and Advisory Committees

Text

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

Legislative History

Amended by Chapter 250, 2024 General Session