Utah Code Title 26B. Utah Health and Human Services Codes § 26B-1-402. Rare Disease Advisory Council Grant Program--Creation--Reporting

(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:

(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:

(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.