Bill > SB5064

This bill establishes an advisory council on rare diseases within the University of Washington school of medicine to address challenges faced by individuals with rare conditions. The council will consist of 12 voting members, including clinicians, researchers, patients, caregivers, and industry representatives, appointed by the secretary of health to serve three-year terms. The council's primary responsibilities include advising the secretary of health on research, diagnosis, treatment, and education related to rare diseases, which are defined as conditions affecting fewer than 200,000 people in the United States. Members will represent both sides of the Cascade mountains and come from diverse backgrounds, including medical professionals, patient advocates, and life sciences experts. The council will coordinate efforts to study rare disease incidence, examine care quality and access, identify research strategies, develop public awareness campaigns, and make recommendations for improving medical provider education and patient support. Starting in December 2026, the council will submit biennial reports to the governor and legislature detailing their work and providing recommendations for supporting rare disease patients. The advisory council is designed to serve an advisory role only and will not 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=5064&Year=2025&Initiative=false