(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.