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Bill would create Washington rare‑disease advisory council housed at UW School of Medicine
Summary
House Bill 1238 would establish a Rare Disease Advisory Council at the University of Washington School of Medicine to advise the Secretary of Health on diagnosis, research, treatment and education for rare diseases.
House Bill 1238 would create a Rare Disease Advisory Council (RDAC) based at the University of Washington School of Medicine to advise the secretary of health on matters related to rare diseases, committee staff and witnesses said at a Jan. 22, 2025 hearing.
Committee staff summarized federal guidance that a rare disease is one that affects fewer than 200,000 people in the United States and said the bill tasks the RDAC with advising on research, diagnosis, treatment, education and public information. Under the proposal the secretary of health would appoint 12 voting members representing clinicians, researchers, hospital and patient representatives, agency officials and industry; subject to appropriation, UW would provide staff support. The council must deliver a report to the governor and legislature beginning Dec. 1, 2026, and biennial updates thereafter.
Supporters included the National Organization for Rare Disorders (NORD) and patient advocates who described the typical "diagnostic odyssey" many families face. Lindsay Viscara, state policy manager for NORD’s Western Region and a rare‑disease caregiver, urged passage to give the rare‑disease community "a unified voice in state government." Sarah Tompkins, a rare‑disease patient and advocate from Bellevue, described a nine‑year journey to diagnosis and said an RDAC would help shorten diagnostic timelines and provide resources for patients and families.
Clinicians and researchers also supported the proposal. Dr. Fuki Marie Hisama, professor of medical genetics and medical director for genetics at the University of Washington School of Medicine, said UW has the clinical and research capacity to host the council and noted that 30 other states already have RDACs. "We have the expertise in rare disorders. We support this bill and are ready to support the work of a newly formed RDAC," Hisama said.
Advocacy witnesses suggested refinements. The Bleeding Disorder Foundation of Washington asked that at least four patient representatives be required to be Washington residents and urged the council to consider access and funding solutions for high‑cost rare‑disease treatments, particularly gene and cell therapies.
Committee members did not take a vote. Sponsors said they are working on an amendment to ensure appointees are Washington residents and asked for the committee’s support at the executive session.
