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

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A research copy — for the controlling text, always check the official state or federal source. Not legal advice.

Effective 5/1/2024

(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.

(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