26B-1-402. Rare Disease Advisory Council Grant Program -- Creation -- Reporting.
(1) As used in this section: "Council" means the Rare Disease Advisory Council described in Subsection (3). "Grantee" means the recipient of a grant under this section to operate the program. "Rare disease" means a disease that affects fewer than 200,000 individuals in the United States.
(2) Within legislative appropriations, the department shall issue a request for proposals for a grant to administer the provisions of this section. The department may issue a grant under this section if the grantee agrees to: convene the council in accordance with Subsection (3); provide staff and other administrative support to the council; and 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: advise the Legislature and state agencies on providing services and care to individuals with a rare disease; make recommendations to the Legislature and state agencies on improving access to treatment and services provided to individuals with a rare disease; identify best practices to improve the care and treatment of individuals in the state with a rare disease; meet at least two times in each calendar year; and be composed of members identified by the department, including at least the following individuals: a representative from the department; researchers and physicians who specialize in rare diseases, including at least one representative from the University of Utah; two individuals who have a rare disease or are the parent or caregiver of an individual with a rare disease; and 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: the activities of the grantee and the council; and recommendations and best practices regarding the ongoing needs of individuals in the state with a rare disease.