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6/3/2025
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Senate approves Lawson bill to create Rare Disease Advisory Council
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STATE HOUSE — The Senate today passed legislation sponsored by Senate President Valarie J. Lawson that would establish a Rare Disease Advisory Council within the Department of Health.
“This council would fill a missing piece in our health care system by serving as a voice for those who live with rare diseases, as well as caregivers, experienced medical professionals and academic researchers,” said President Lawson (D-Dist. 14, East Providence). “It would be tremendously beneficial to patients with diseases that are not always well understood by the general public, as well as their families and medical providers.”
Under the terms of the legislation (2025-S 0474), the council would provide guidance and recommendations to educate health care providers and the citizens of the state about rare diseases. In the United States, more than 7,000 rare diseases collectively affect more than 25 million Americans. Rare diseases are classified as any disease that affects less than 200,000 Americans.
Rare diseases include more familiar conditions such as cystic fibrosis, ALS and Tourette’s syndrome, as well as less familiar conditions such as Duncan’s Syndrome, Madelung’s disease and acromegaly/gigantism. The prevalence of rare diseases is often an estimate and may change over time. These conditions are complex and often not well understood, causing many patients to encounter greater challenges in being properly diagnosed or having access to effective treatments.
If this legislation is enacted, Rhode Island would join 30 other states that have created Rare Disease Advisory Councils, including Massachusetts, Maine and New Hampshire.
The bill now heads to the House of Representatives, where Speaker Pro Tempore Brian Patrick Kennedy (D-Dist. 38, Hopkinton, Westerly) has introduced companion legislation (2025-H 5023). President Lawson attended a conference on the issue along with Representative Kennedy. Representative Kennedy, who serves as president of the National Conference of State Legislatures, worked extensively with lawmakers from other states to develop this legislation.
“We thank President Lawson and Representative Kennedy for their leadership in introducing legislation to establish a Rare Disease Advisory Council, which would give patients and families a voice in state government to address the unique challenges of rare disease diagnosis and treatment. We are particularly proud that these efforts have been shaped by advocates living, working and studying in Rhode Island, ensuring the proposed council would authentically reflect the state’s unique healthcare landscape and needs. This council represents an opportunity to develop Rhode Island-specific solutions that could significantly improve the lives of thousands of residents affected by rare diseases,” said Carolyn Sheridan, state policy manager for the National Organization for Rare Disorders.
For more information, contact:
Greg Pare, Director of Communications for the Senate
State House Room 112
Providence, RI 02903
(401) 276-5558
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