The bill establishes an advisory council on rare diseases within the University of Washington School of Medicine to provide guidance to the Secretary of Health on matters related to research, diagnosis, treatment, and education concerning rare diseases. The council will consist of 12 voting members, including clinicians, researchers, patients, and representatives from the life sciences industry, ensuring representation from both sides of the Cascade Mountains. Members will serve three-year terms, with provisions for travel expense reimbursement and staff support from the University of Washington. The council is tasked with convening regularly, self-selecting a chair, and maintaining a quorum for official actions.
Additionally, the council will advise on the incidence and prevalence of rare diseases in Washington, identify effective strategies for diagnosis and treatment, and recommend educational initiatives for medical providers and the public. It will also develop strategies to raise awareness and create a centralized resource website for patients and caregivers. The council is required to submit a biennial report to the governor and legislature detailing its activities and recommendations, while maintaining an advisory role that does not supersede local health jurisdictions' authority during communicable disease outbreaks.