NORD Celebrates Rhode Island's Historic Creation of Rare Disease Advisory Council

New council ensures thousands of Rhode Islanders living with rare diseases have a voice in state policy

PROVIDENCE, R.I., July 1, 2025 /PRNewswire/ -- Rhode Island Gov. Daniel McKee has signed into law Senate Bill S.474/House Bill H.5023, establishing the state's Rare Disease Advisory Council (RDAC) within the Department of Health.

This new law, spearheaded by the National Organization for Rare Disorders (NORD^®) through its Project RDAC initiative and coordination of local advocates working with Rhode Island Senate President Valarie J. Lawson and Representative Brian-Patrick Kennedy, the bill's sponsors, ensures that the thousands of Rhode Islanders living with a rare disease — part of the one in 10 Americans affected by these conditions — have a meaningful voice in state policy that impacts their healthcare access, treatment options, and quality of life.

"The creation of Rhode Island's Rare Disease Advisory Council represents a significant milestone for New England's rare disease community, as advocates — many of whom are future physicians — have successfully championed legislation that will embed the voices of rare disease patients, their caregivers, and loved ones within their state government," said NORD Chief Executive Officer Pamela K. Gavin.

With this legislation, signed on Friday, Rhode Island becomes the 33rd state to establish an RDAC, joining a growing national movement to embed rare disease advocacy within state government structures. The council will focus on five core areas: policy recommendations and public hearings, addressing health disparities and continuity of care, provider education and training, emergency preparedness planning, and creating publicly accessible resources for patients and families.

"This council will fill a missing piece in our health care system by serving as a voice for those who live with rare diseases. This council, which will include individuals living with rare diseases, caregivers, experienced medical professionals, and academic researchers, will be tremendously beneficial to patients with diseases who are not always well understood by the general public, as well as their families and medical providers," said Lawson, the Rhode Island Senate President and bill sponsor.

NORD works with thousands of grassroots advocates across the United States to advance federal and state policies that benefit the more than 30 million Americans who have a rare disease, defined as any disease that impacts fewer than 200,000 people.

Of the more than 10,000 known rare diseases, only approximately 5% have a treatment that has been approved by the Food and Drug Administration (FDA). Getting an accurate diagnosis can take years for some rare disease patients, and their direct medical costs have been shown to be three to five times higher than those of someone of similar age who does not have a rare disease.

The Rhode Island RDAC addresses a critical gap in New England, where Vermont remains the only other state in the region without such a council. These advisory councils serve as foundational components of a rare disease advocacy ecosystem, affording patients and families with a platform and voice within state government.

Individuals can get involved and support their state's rare disease community by joining NORD's Rare Action Network^® and learning more about NORD's Project RDAC and Rare Disease Advisory Councils.

About the National Organization for Rare Disorders

Founded in 1983, the National Organization for Rare Disorders (NORD^®) is the leading independent, nonpartisan, nonprofit organization dedicated to improving the health and lives of over 30 million Americans living with rare diseases. In partnership with more than 350 disease-specific member patient organizations, NORD drives progress in rare disease research, care, and policy. Learn more at rarediseases.org.

SOURCE National Organization for Rare Disorders (NORD®)