26B-1-402. Rare Disease Advisory Council Grant Program — Creation — Reporting.
| (1) |
As used in this section:
Terms Used In Utah Code 26B-1-402- State: when applied to the different parts of the United States, includes a state, district, or territory of the United States. See Utah Code 68-3-12.5
- United States: includes each state, district, and territory of the United States of America. See Utah Code 68-3-12.5
| (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. |
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| (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). |
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| (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. |
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| (4) |
Before November 30, 2021, and before November 30 of every odd-numbered year thereafter, the department 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. |
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Renumbered and Amended by Chapter 305, 2023 General Session
