{"data":{"id":"us-ky/krs-211.577","jurisdiction":"us-ky","citation":"KRS 211.577","heading":"Duties of council -- Report -- Response -- Hearing.","body":"(1) The Kentucky Rare Disease Advisory Council shall:\n(a) Act as the advisory body on rare diseases to the General Assembly, the\nGovernor, and to all relevant state and private agencies that provide services\nto, or are charged with the care of, individuals with rare diseases;\n(b) Coordinate its duties with those community -based organizations and private -\nsector institutions within the state for the purpose of ensuring greater\ncooperation regarding the research, diagnosis, and treatment of rare diseases.\nThe coordination shall require, when appropriate:\n1. Disseminating the outcomes of the advisory council's research,\nidentified best practices, and policy recommendations; and\n2. Utilizing common research collection and dissemination procedures;\n(c) Research and determine the most appropriate methods to collect thorough and\ncomplete information on rare diseases in Kentucky and other information as\nthe council deems necessary and appropriate to collect;\n(d) Research and identify priorities relating to the quality, co st-effectiveness, and\naccess to treatment and services provided to persons with rare diseases, and\ndevelop related policy recommendations;\n(e) Identify best practices for rare disease care from other states and at the\nnational level that may improve rare disease care in Kentucky;\n(f) Develop effective strategies to raise public awareness of rare diseases in\nKentucky;\n(g) Ensure tha t the duties of the council are carried out in a manner that is\ncoordinated and compatible with similar research being conducted at the state\nand federal levels;\n(h) In conjunction with the state's medical schools, the state's schools of public\nhealth, and hospitals in the state that provide care to persons diagnosed with a\nrare disease, develop a list of existing, publicly accessible resources on\nresearch, diagnosis, treatment, and education relating to rare diseases; and\n(i) Report biennially on its activ ities, findings, and recommendations relating to\nthe quality, cost -effectiveness, and access to treatment and services for\npersons with rare diseases in Kentucky to the Governor, the Cabinet for\nHealth and Family Services, and the General Assembly.\n(2) Upon receipt of the council's biennial report, the Governor and Cabinet for Health\nand Family Services shall within ninety (90) days issue a written response to the\ncouncil detailing its efforts to improve state policies pertaining to the identification,\ntreatment, and care of rare diseases.\n(3) Upon receipt of the council's biennial report, the Interim Joint Committee on Health\nServices shall within one hundred twenty (120) days convene a hearing on issues\npertaining to the identification, treatment, and care of rare diseases identified by the\ncouncil in its report.","path":["KRS Chapter 211"],"source_url":"https://apps.legislature.ky.gov/law/statutes/statute.aspx?id=53696","current_through":"Includes enactments through the 2026 Regular Session","vintage":"09/05/2026","retrieved_at":"2026-09-05T20:52:13Z","sha256":"13eed9728ae2a7a6489862884f62dfab509671876b2ce4fdecfefe7245993470","source_id":"us-ky","stale":false,"prev":"us-ky/krs-211.576","next":"us-ky/krs-211.578"},"notice":"GroundRules: Original legal text. Not legal advice."}