SB 5064 Washington Senate · 2025-2026 Regular Session

Creating an advisory council on rare diseases.

SB 5064 establishes an advisory council on rare diseases within the University of Washington School of Medicine to advise Washington's Secretary of Health. The council, composed of 12 members including clinicians, rare disease patients, caregivers, patient advocates, and industry representatives, must ensure geographic representation across the Cascade Mountains. It will focus on improving research, diagnosis, treatment, and public education about rare diseases, identify effective care strategies, and recommend creating a centralized online resource for patients. The council must submit biennial reports to the legislature starting in 2026, but it serves only in an advisory capacity without overriding local health authority.
Bill status in committee 1 of 4 stages cleared
Introduction
Jan 2026
Committee Review
Floor Vote
Governor
Introduced Jan 12, 2026 Last action Jan 12, 2026
Maddy AI version diff · 1 comparison

What changed between versions

Bill Substitute Bill · 2 edits
MINOR
The bill was reclassified as a substitute bill and its reading date was updated to January 31, 2025. A key substantive change adds a residency requirement for patient representatives on the new advisory council, ensuring that the four individuals representing patients are Washington residents.
Scope change
The bill's scope regarding the composition of the advisory council was narrowed by adding a residency requirement for patient representatives.
ELIGIBILITY

Added a requirement that the four patient representatives on the advisory council must be residents of Washington.

TECHNICAL

Updated the bill title to 'Substitute Senate Bill 5064' and changed the pre-filed and read dates to reflect the latest legislative action.

Floor votes

How they voted

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Full legislative history

Actions timeline

Total actions
9
Key actions
3
Committee
5
Jan 12, 2026
Introduced
By resolution, reintroduced and retained in present status.
upper
Feb 10, 2025
Upper · Passed
Public hearing in the Senate Committee on Ways & Means at 4:00 PM.
upper
Jan 31, 2025
Committee
Referred to Ways & Means.
upper
Jan 30, 2025
Committee
And refer to Ways & Means.
upper
Jan 30, 2025
Upper · Passed
Executive action taken in the Senate Committee on Health & Long-Term Care at 8:00 AM.
upper
Jan 23, 2025
Upper · Passed
Public hearing in the Senate Committee on Health & Long-Term Care at 8:00 AM.
upper
1 primary · 12 co-sponsors

Sponsors