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Senate hears bill to create Rare Disease Advisory Council; patients, clinicians urge state support
Summary
The Senate Health & Long Term Care Committee held a Jan. 23 hearing on S.B. 5064 to create a 12‑member Rare Disease Advisory Council housed at the University of Washington School of Medicine.
The Senate Health & Long Term Care Committee held a public hearing Jan. 23 on S.B. 5064, a bill to create a 12‑member advisory council on rare diseases hosted at the University of Washington School of Medicine. Committee staff, the bill sponsor and nearly four dozen witnesses made the case that a state council would give people with rare diseases a centralized forum for advising the governor and Legislature.
What the bill would do: Committee staff explained that the bill would establish a 12‑member voting 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 for rare conditions. The council would submit annual reports beginning Dec. 1, 2026.
Why advocates testified in favor
- Diagnostic delay and access to testing: Patients and family members…
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