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6/20/2025
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General Assembly passes Kennedy, Lawson bill to create Rare Disease Advisory Council
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STATE HOUSE — The General Assembly today passed legislation introduced by Speaker Pro Tempore Brian Patrick Kennedy and Senate President Valarie J. Lawson that would establish a Rare Disease Advisory Council within the Department of Health.
Under the terms of the legislation (2025-H 5023A, 2025-S 0474aa), the council would provide guidance and recommendations to educate health care providers and the citizens of the state about rare diseases.
“It’s estimated that one in 10 Rhode Islanders may face some sort of rare disease. Because of the small number of patients who have them, it can be very difficult for state governments to have an in-depth understanding of rare disease communities,” said Representative Kennedy (D-Dist. 38, Hopkinton, Westerly). This will create awareness and help to contribute ways to assist these individuals who are suffering from rare diseases, as well as being a valuable advisory board to help medical officials.”
Representative Kennedy, who is president emeritus of the National Conference of State Legislatures, worked extensively with lawmakers from other states to develop this legislation. 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.
“This council would fill a missing piece in our health care system by serving as a voice for those who live with rare diseases,” said President Lawson (D-Dist. 14, East Providence), who attended a conference on the issue along with Representative Kennedy. “This council, which would include individuals living with rare diseases, caregivers, experienced medical professionals and academic researchers, 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.”
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.
“We thank Representative Kennedy and Senator Lawson 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,” said Carolyn Sheridan, state policy manager for the National Organization for Rare Disorders. “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.”
The measure now moves to the governor’s office. Rhode Island would join 30 other states that have created Rare Disease Advisory Councils, including Massachusetts, Maine and New Hampshire.
For more information, contact:
Daniel Trafford, Publicist
State House Room 20
Providence, RI 02903
(401)222-1922
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