The bill establishes an advisory council on rare diseases within the Washington State Department of Health to provide guidance to the governor, state agencies, and the legislature on issues related to rare diseases. The council will consist of 12 voting members, including clinicians, researchers, patients, and representatives from relevant organizations, appointed by the secretary of health. The council's responsibilities include advising on research, diagnosis, treatment, and education related to rare diseases, as well as coordinating efforts to study the incidence and prevalence of these diseases in the state. Members will serve three-year terms and will be reimbursed for travel expenses.
Additionally, the council is tasked with creating a centralized repository of information by July 1, 2026, to assist healthcare providers and patients in accessing resources related to rare diseases. The council will also submit biennial reports to the governor and legislature detailing its activities and recommendations for improvements. Importantly, the council will serve in an advisory capacity and will not have the authority to override local health jurisdictions in the event of a communicable rare disease outbreak.