Rare Disease Advisory Council Grant Program -- Creation -- Reporting.

1. Law
2. Utah Code
3. Utah Health Code
4. Department of Health Organization
5. Rare Disease Advisory Council Grant Program -- Creation -- Reporting.

Affected by 63I-1-226 on 7/1/2026

Effective 5/12/2020
26-1-41. Rare Disease Advisory Council Grant Program -- Creation -- Reporting.

• (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, 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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