Bill > H525

This bill reorganizes the Advisory Council on Rare Diseases by transferring it from the University of North Carolina School of Medicine to the Department of Health and Human Services, and significantly expanding its membership and responsibilities. The council will now consist of 19 members, including physicians, healthcare professionals, patients, caregivers, researchers, and representatives from various sectors like healthcare, insurance, and biotechnology. Members will serve staggered terms of two to three years, with some initial members allowed up to four consecutive terms. The council's expanded duties include advising the Governor, Secretary, and General Assembly on rare disease research, diagnosis, treatment, and education, coordinating statewide efforts to understand and raise awareness about rare diseases, identifying policy initiatives, and developing resources to improve treatment and access for rare disease patients. The bill also appropriates $250,000 in recurring funds for two fiscal years (2025-2026 and 2026-2027) to cover the council's operating expenses. A "rare disease" is defined according to federal statute as a condition affecting fewer than 200,000 people in the United States. The council will now meet at least quarterly and require a majority vote for official actions, with members receiving per diem and travel expenses.

Budget and Finance

https://www.ncleg.gov/BillLookUp/2025/H525