Rhode Island Creates Rare Disease Advisory Council

Governor Dan McKee Signs Legislation

WASHINGTON, July 3, 2025 /PRNewswire/ -- The Rare Access Action Project (RAAP) applauds Governor Dan McKee for signing into law House Bill No. 5023 Sub A and Senate Bill No. 474 as amended, establishing the Rare Disease Advisory Council within the Rhode Island Department of Health.

This marks a pivotal milestone for the more than 1 in 10 Rhode Islanders living with a rare disease and their families. For too long, the unique challenges faced by this community such as delayed diagnoses, limited treatment options, and barriers to specialized care have been overlooked. With the creation of this Council, Rhode Island takes a critical step toward ensuring that rare disease patients are no longer invisible in health policy discussions.

"This initiative positions Rhode Island as a national leader in advancing equity for patients with rare conditions. The Council's structure and mission can serve as a powerful model for other states seeking to better understand and address the needs of rare disease patients and their families. RAAP commends Representative Brian Patrick Kennedy and Senate President Valarie Lawson for their leadership and unwavering commitment to the rare disease community. Their work galvanized bipartisan support and made clear that Rhode Island stands with patients and families affected by rare diseases," stated RAAP Executive Director, Michael Eging. 

The Rare Disease Advisory Council will serve as an essential platform to elevate the voices of patients, caregivers, clinicians, and advocates. It will provide strategic guidance to educate healthcare providers and advise policymakers on how to improve care delivery, increase early diagnoses, and expand access to innovative therapies.

"The creation of the Rare Disease Advisory Council is a testament to what can be achieved when policymakers and advocates come together for a common cause," said Representative Brian Patrick Kennedy. "I commend RAAP for their tireless support and the powerful advocacy that helped bring this legislation to life. Thanks to their efforts, we are one step closer to ensuring every rare disease patient in Rhode Island receives the care and attention they deserve," concluded Kennedy.

RAAP, the Rare Access Action Project, is a coalition of life sciences and patient stakeholders that explore creative policy solutions to address structural issues in access and coverage. Our priority is to help ensure rare disease patients have access to the care and treatments they need. RAAP is a registered 501 c4 non-profit organization.

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SOURCE Rare Access Action Project (RAAP)