Bill > HB1019

This bill establishes the Oklahoma Rare Disease Advisory Council within the State Department of Health to provide guidance and recommendations on rare disease issues. The Council will be composed of at least 17 members appointed by the Chair, representing diverse stakeholders including patients, healthcare professionals, researchers, and government representatives. Members will serve three-year terms, with initial members potentially serving up to four years to ensure knowledge transfer. The Council's primary purposes include conducting a landscape survey of rare disease needs, providing testimony on legislation, consulting experts to develop policy recommendations, establishing emergency care protocols, identifying research opportunities, and working to reduce health disparities. The Council is required to submit an annual report to state leadership, with a draft made available for public comment, and will be responsible for holding public meetings at least quarterly and maintaining a public website. A rare disease is defined as a condition affecting fewer than 200,000 people in the United States. The Council's first chair will be appointed by the Governor by December 1, 2025, with the initial meeting to occur no later than February 1, 2026, and the entire initiative will become effective on November 1, 2025.

Budget and Finance

http://www.oklegislature.gov/BillInfo.aspx?Bill=hb1019&Session=2600