Bill > HB2457

This bill establishes the Rare Disease Advisory Council within the Oregon Health Authority to address the challenges faced by individuals with rare diseases, which are defined as diseases affecting fewer than 200,000 people in the United States. The council will be composed of at least 20 members appointed by the Governor, including healthcare professionals, researchers, patients, caregivers, and representatives from various state agencies and organizations. The council's primary responsibilities include developing policy recommendations to improve care for rare disease patients, advising state leadership on research and treatment, providing support and resources, maintaining a public website with rare disease information, and raising public awareness. Members will serve four-year terms and will not receive compensation but may be reimbursed for expenses. The council is required to submit a biennial report to the Governor and legislative committees describing its work and potentially recommending policy changes. Initial appointments will be made by March 1, 2026, with the council beginning regular meetings by June 1, 2026. For the first round of appointments, half of the members will be appointed to two-year terms, and the other half to four-year terms. The council will also prepare a comprehensive report on the number and needs of rare disease patients, caregivers, and healthcare providers in Oregon by July 1, 2027.

Budget and Finance, Health and Social Services

https://olis.oregonlegislature.gov/liz/2025R1/Measures/Overview/HB2457