WA HB1238

Establishes an advisory council on rare diseases within the University of Washington School of Medicine to advise the Secretary of Health on research, diagnosis, treatment, and education related to rare diseases

Secretary of Health appoints 12 voting members including four clinicians/researchers, four patient representatives (two patients, one caregiver, one advocacy group representative), two life sciences industry representatives, and two state agency representatives

Members serve three-year terms with a maximum of three consecutive terms, and the council must meet at least quarterly after the first meeting convened within six months of the effective date

Council duties include studying incidence and prevalence of rare diseases in Washington, identifying effective diagnostic and treatment strategies, recommending education initiatives for medical providers, and developing a centralized patient resource website

Biennial reports to the governor and legislature required beginning December 1, 2026, detailing council work and recommendations for supporting rare disease patients