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SB 474

AN ACT RELATING TO HEALTH AND SAFETY -- RARE DISEASE ADVISORY COUNCIL

2025 Regular Session

Rhode Island establishes a Rare Disease Advisory Council to coordinate care, research, and education initiatives for patients with rare diseases within the state health system.

06/27/2025 Signed by Governor
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Bill Summary · SB 474

Legislative bill overview

SB 474 establishes a Rare Disease Advisory Council in Rhode Island to coordinate state efforts addressing rare diseases, improve patient access to care, and facilitate research and education initiatives. The council will serve as an advisory body to the Department of Health, bringing together stakeholders including patients, healthcare providers, and researchers to develop recommendations and policies.

Why is this important

Rare diseases affect approximately 30 million Americans but receive limited research funding and clinical attention due to small patient populations. By creating a dedicated advisory council, Rhode Island aims to improve diagnosis times, treatment access, and quality of life for its residents with rare diseases—conditions that often go undiagnosed for years and require specialized expertise to manage.

Potential points of contention

  • Resource allocation: Questions about funding for the council's operations and whether recommendations will translate into actual state resources or remain advisory without enforcement mechanisms
  • Patient representation balance: Concerns about ensuring diverse rare disease communities are adequately represented, given the hundreds of rare diseases that exist
  • Implementation clarity: The bill's effectiveness depends on how well the council coordinates with existing health departments and whether it has sufficient authority to influence policy decisions

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

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