{"data":{"id":"us-ut/utah-code-26b-1-402","jurisdiction":"us-ut","citation":"Utah Code § 26B-1-402","heading":"Rare Disease Advisory Council Grant Program -- Creation -- Reporting.","body":"(1) As used in this section:\n(a) \"Council\" means the Rare Disease Advisory Council described in Subsection (3).\n(b) \"Grantee\" means the recipient of a grant under this section to operate the program.\n(c) \"Rare disease\" means a disease that affects fewer than 200,000 individuals in the United States.\n(2)\n(a) Within legislative appropriations, the department shall issue a request for proposals for a grant to administer the provisions of this section.\n(b) The department may issue a grant under this section if the grantee agrees to:\n(i) convene the council in accordance with Subsection (3);\n(ii) provide staff and other administrative support to the council; and\n(iii) in coordination with the department, report to the Legislature in accordance with Subsection (4).\n(3) The Rare Disease Advisory Council convened by the grantee shall:\n(a) advise the Legislature and state agencies on providing services and care to individuals with a rare disease;\n(b) make recommendations to the Legislature and state agencies on improving access to treatment and services provided to individuals with a rare disease;\n(c) identify best practices to improve the care and treatment of individuals in the state with a rare disease;\n(d) meet at least two times in each calendar year; and\n(e) be composed of members identified by the department, including at least the following individuals:\n(i) a representative from the department;\n(ii) researchers and physicians who specialize in rare diseases, including at least one representative from the University of Utah;\n(iii) two individuals who have a rare disease or are the parent or caregiver of an individual with a rare disease; and\n(iv) two representatives from one or more rare disease patient organizations that operate in the state.\n(4) Before November 30 of every odd-numbered year, the grantee shall report to the Health and Human Services Interim Committee on:\n(a) the activities of the grantee and the council; and\n(b) recommendations and best practices regarding the ongoing needs of individuals in the state with a rare disease.","path":["Title 26B Utah Health and Human Services Code","Chapter 26B-1 Department of Health and Human Services","Part 26B-1-4 Boards, Commissions, Councils, and Advisory Committees"],"source_url":"https://le.utah.gov/xcode/Title26B/Chapter1/26B-1-S402.html","current_through":"2026 General Session","vintage":"","retrieved_at":"2026-09-03T11:34:33Z","sha256":"cbddcca2b33ec36970ae301e84b92d91142d33d75385d07485ea2721e1b60fa4","source_id":"us-ut","stale":false,"prev":"us-ut/utah-code-26b-1-401","next":"us-ut/utah-code-26b-1-410"},"notice":"GroundRules: Original legal text. Not legal advice."}