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Bill

SB 5064

Creating an advisory council on rare diseases.

2025-2026 Regular Session Introduced by Annette Cleveland and 11 co-sponsors

Washington creates advisory council on rare diseases to coordinate research, improve diagnosis and treatment access for underserved patient populations.

Public hearing in the Senate Committee on Ways & Means at 4:00 PM.
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Bill Summary · SB 5064

Legislative bill overview

SB 5064 establishes an advisory council on rare diseases in Washington state to coordinate research, improve patient outcomes, and facilitate information sharing among healthcare providers, patients, and researchers. The council would bring together stakeholders to address gaps in diagnosis, treatment, and support for individuals with rare genetic and orphan diseases.

Why is this important

Rare diseases affect millions of Americans but individually impact small populations, making them low priorities for pharmaceutical development and medical research funding. Creating a dedicated advisory council could improve diagnosis times (which average 5-7 years for rare disease patients), reduce healthcare costs through better coordination, and help Washington position itself as a leader in rare disease research and treatment.

Potential points of contention

  • Fiscal impact: The public hearing in Ways & Means (scheduled for 2/10) suggests cost concerns; establishing a new council requires budget allocation that may compete with other healthcare priorities
  • Council composition and authority: Unclear whether the council will have advisory-only power or influence over funding/policy decisions, and whether it adequately represents patient voices versus institutional interests
  • Implementation burden: Healthcare providers and researchers may face additional reporting or coordination requirements without sufficient resources or incentives to participate

Compiled from official sources — confirm details with the bill’s official record.

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