Bill > SB225

This bill establishes the Oklahoma Rare Disease Advisory Council within the State Department of Health to provide guidance and recommendations about rare disease issues in the state. The Council will consist of at least 13 members appointed by the chair, including representatives from various sectors such as healthcare, research, patient advocacy, and industry, with specific requirements to ensure a diverse and comprehensive representation. The Council's primary responsibilities include conducting public hearings to understand rare disease patient needs, providing testimony on legislation, consulting with experts to develop policy recommendations, establishing best practices for emergency care, identifying research opportunities, and working to reduce health disparities. Members will serve three-year terms, with the initial chair appointed by the Governor and subsequent chairs elected by Council members. The Council must submit an annual report to state leadership, hold public meetings at least quarterly, maintain a public website, and create opportunities for public input. A "rare disease" is defined as a condition affecting fewer than 200,000 people in the United States. The bill will take effect on November 1, 2025, with the initial Council meeting to occur no later than February 1, 2026.

Health and Social Services

http://www.oklegislature.gov/BillInfo.aspx?Bill=sb225&Session=2600