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Advocates urge Rhode Island to create Rare Disease Advisory Council; sponsor seeks council structure within Department of Health
Summary
Supporters told the House Health and Human Services Committee that converting an office into a Rare Disease Advisory Council would be low-cost and provide diagnosis, treatment and policy guidance to families and clinicians across Rhode Island.
Representative Speaker Pro Tem Kennedy introduced House Bill 5,023 on Feb. 6, 2025, proposing to establish a Rare Disease Advisory Council within the Rhode Island Department of Health. Kennedy told the committee the bill previously passed the House in 2024 but did not clear the Senate, and his amendments would change the proposal from an office to a council and add stakeholder membership.
Kennedy said the council would likely meet quarterly and ‘‘we think we can do it without requiring a great amount of financial funding,’’ while remaining housed within the Department…
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