Bill > SB207

This bill establishes the Oklahoma Rare Disease Advisory Council (ORDAC) within the State Department of Health to provide guidance and recommendations on rare disease issues. 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 government agencies, with a requirement to include at least two rare disease patients and one caregiver. The Council's primary purpose is to educate the public, Legislature, and state agencies about rare disease needs, conduct public hearings, develop policy recommendations, establish best practices for emergency care, and identify research opportunities. Members will serve three-year terms, with the initial chair appointed by the Governor for a three-year term, and subsequent chairs elected by Council members. The Council must submit an annual report to state leadership, hold public meetings at least quarterly, and maintain a public website for transparency. Additionally, the bill modifies the state's newborn screening program requirements, mandating that the Health Department compile and publish an annual report detailing screened disorders and efforts to expand screening. A "rare disease" is defined as a condition affecting fewer than 200,000 people in the United States. The bill will become effective on July 1, 2025, with an emergency clause ensuring immediate implementation upon approval.

Budget and Finance, Health and Social Services

http://www.oklegislature.gov/BillInfo.aspx?Bill=sb207&Session=2600