Bill > HB1238

This bill creates an advisory council on rare diseases within the University of Washington school of medicine to address the challenges faced by individuals with rare diseases, which are defined as conditions affecting fewer than 200,000 people in the United States. The council will consist of 12 voting members, including four clinicians and researchers specializing in rare diseases, four patient representatives, the director of the children and youth with special health care needs program, a representative from the health care authority, and two representatives from the life sciences industry. The members will be appointed by the secretary of health for three-year terms, with provisions to ensure geographic representation and diversity of expertise. The council's primary responsibilities include advising the secretary of health on research, diagnosis, treatment, and education related to rare diseases, coordinating efforts to study rare disease incidence and prevalence, identifying effective research-based strategies, making recommendations to improve medical provider education, developing public awareness strategies, and creating a centralized information resource for patients and caregivers. Starting in December 2026, the council will submit biennial reports to the governor and legislature detailing their work and recommending potential improvements. The council will serve in an advisory capacity and cannot supersede local health jurisdictions' authority in responding to communicable rare diseases.

Budget and Finance, Health and Social Services

https://app.leg.wa.gov/billsummary?BillNumber=1238&Year=2025&Initiative=false