This bill creates a new advisory council on rare diseases housed at the University of Washington School of Medicine and adds new sections to chapter 43.70 RCW. The Secretary of Health must appoint 12 voting members with specified representation from patients, caregivers, advocates, life sciences industry, academic institutions and hospitals (with geographic representation east and west of the Cascades), the Health Care Authority, and the Department of Health’s children and youth with special health care needs program director or designee. Voting members serve three-year terms, may not serve more than three consecutive terms, vacancies are filled like the original appointment, and members may be reimbursed for travel under RCW 43.03.050 and 43.03.060. Subject to appropriations, the University of Washington will provide staff support including physician leadership. The council chooses its chair, must convene its first meeting within six months of the bill’s effective date, must meet at least quarterly thereafter, and conducts official business by majority vote of a quorum. The council is purely advisory and its duties include advising the Secretary of Health; coordinating study of the incidence and prevalence of rare diseases in Washington; examining quality-of-care outcomes, cost-effectiveness of earlier diagnosis and treatment, and access to services; identifying research-based strategies for diagnosis, treatment, and prevention; recommending education for providers, schools, and public health districts; developing public awareness strategies; and recommending creation of a centralized public website or resource repository for patients, families, and caregivers. It must submit a report to the Governor and Legislature beginning December 1, 2026, and every two years thereafter. The bill defines “rare disease” as a disease that affects fewer than 200,000 people in the United States and specifies that the council may not supersede local health jurisdictions’ authority in responding to outbreaks of communicable rare diseases. This is a procedural and organizational change establishing an advisory body; it does not create new crimes or change penalties. Affected entities include the University of Washington School of Medicine, the Office of the Secretary of Health, the Department of Health, the Health Care Authority, life sciences industry representatives, patient advocacy groups, academic research institutions and hospitals, and local health jurisdictions. The text provided omits the bill’s effective date, the exact RCW subsection numbers for the new sections, any details on nonvoting members or additional staff roles, specific appropriation amounts for UW support, detailed appointment procedures, and clarifies ambiguously worded titles for the Department of Health representative.

If enacted, the bill will create a standing advisory group housed at the University of Washington School of Medicine that brings patients, caregivers, researchers, hospitals, industry, and state health officials together on a regular schedule to advise the Secretary of Health and produce recurring reports to the Governor and Legislature. In practice this centralizes rare-disease expertise and advocacy into a single forum, increases the visibility of rare disease issues statewide, and produces biennial recommendations that could prompt future program or funding changes, while explicitly leaving local health jurisdictions in charge of any communicable-disease outbreak response. The University of Washington will likely need staff time and a physician leader to support the group if the Legislature provides funding, and council members and state appointing authorities will incur ongoing time and travel costs eligible for reimbursement; the Secretary of Health gains a formal advisory mechanism and must make appointments. Key uncertainties are the effective date (which affects when the first meeting must be convened), the level of appropriations for UW staff support, and some appointment details and exact office titles, so actual costs, timing, and operational practices will depend on those unresolved elements.