Rhode Island Launches Rare Disease Advisory Council to Advocate for Patients' Rights and Needs
On July 1, 2025, Governor Daniel McKee of Rhode Island signed into law two significant legislative bills, Senate Bill S.474 and House Bill H.5023, which establish the state's Rare Disease Advisory Council (RDAC) under the Department of Health. This initiative represents an important step forward for individuals living with rare diseases across the state, ensuring that their voices are heard in matters of healthcare policy and patient advocacy.
The launch of the RDAC aligns with a national movement, spearheaded by the National Organization for Rare Disorders (NORD), to create councils across various states that better serve the rare disease community. With approximately 30 million Americans affected by rare diseases—defined as conditions affecting fewer than 200,000 people—this new council will provide critical support for Rhode Islanders navigating the complex healthcare landscape.
The bill was championed by local advocates, in collaboration with Rhode Island Senate President Valarie J. Lawson and Representative Brian-Patrick Kennedy. According to NORD’s CEO Pamela K. Gavin, the creation of this council signifies a pivotal moment for the rare disease community in New England, emphasizing the need for increased advocacy within state governance.
This new council is poised to address a variety of essential areas, including:
1. Health Disparities and Continuity of Care: Ensuring patients with rare diseases have access to necessary medical services and ongoing treatment options.
2. Provider Education and Training: Enhancing the knowledge of healthcare providers regarding rare diseases to facilitate better patient care.
3. Emergency Preparedness Planning: Creating strategies to ensure that rare disease patients are considered in emergency health situations.
4. Publicly Accessible Resources: Developing materials that inform patients and families about available services and support.
Rhode Island now joins 32 other states that have implemented similar councils aimed at amplifying the voices of rare disease patients and their families. Senate President Lawson expressed optimism about the council's future, stating, “This council will fill a missing piece in our health care system by serving as a voice for those who live with rare diseases.” The council will comprise individuals with rare diseases, their caregivers, as well as seasoned medical professionals and academic researchers who will collectively work towards advocating for relevant policies.
NORD, with its vast network of grassroots advocates throughout the country, will continue to play a pivotal role in advancing policies that support the over 30 million individuals affected by rare diseases. It’s noteworthy that, of the over 10,000 known rare diseases, only about 5% have received treatments approved by the FDA. Diagnosing these rare diseases can often take years, leading to significantly higher medical costs compared to individuals without rare diseases.
The establishment of the Rhode Island RDAC addresses a significant gap in advocacy efforts within New England, where Vermont remains the sole state without such a council. Advisory councils like this are crucial for creating a robust ecosystem of rare disease advocacy, empowering patients and families to actively participate in state policy formation.
Individuals interested in contributing to their state's rare disease initiatives can become involved through NORD's Rare Action Network®. For more information about NORD's new project RDAC and the role of Rare Disease Advisory Councils, visit their website at rarediseases.org.
With Rhode Island's bold move, the state sets a precedent that may inspire additional reforms across the nation, enhancing the quality of life for all affected individuals and fortifying their rightful place in the healthcare debate.
The launch of the RDAC aligns with a national movement, spearheaded by the National Organization for Rare Disorders (NORD), to create councils across various states that better serve the rare disease community. With approximately 30 million Americans affected by rare diseases—defined as conditions affecting fewer than 200,000 people—this new council will provide critical support for Rhode Islanders navigating the complex healthcare landscape.
The bill was championed by local advocates, in collaboration with Rhode Island Senate President Valarie J. Lawson and Representative Brian-Patrick Kennedy. According to NORD’s CEO Pamela K. Gavin, the creation of this council signifies a pivotal moment for the rare disease community in New England, emphasizing the need for increased advocacy within state governance.
This new council is poised to address a variety of essential areas, including:
1. Health Disparities and Continuity of Care: Ensuring patients with rare diseases have access to necessary medical services and ongoing treatment options.
2. Provider Education and Training: Enhancing the knowledge of healthcare providers regarding rare diseases to facilitate better patient care.
3. Emergency Preparedness Planning: Creating strategies to ensure that rare disease patients are considered in emergency health situations.
4. Publicly Accessible Resources: Developing materials that inform patients and families about available services and support.
Rhode Island now joins 32 other states that have implemented similar councils aimed at amplifying the voices of rare disease patients and their families. Senate President Lawson expressed optimism about the council's future, stating, “This council will fill a missing piece in our health care system by serving as a voice for those who live with rare diseases.” The council will comprise individuals with rare diseases, their caregivers, as well as seasoned medical professionals and academic researchers who will collectively work towards advocating for relevant policies.
NORD, with its vast network of grassroots advocates throughout the country, will continue to play a pivotal role in advancing policies that support the over 30 million individuals affected by rare diseases. It’s noteworthy that, of the over 10,000 known rare diseases, only about 5% have received treatments approved by the FDA. Diagnosing these rare diseases can often take years, leading to significantly higher medical costs compared to individuals without rare diseases.
The establishment of the Rhode Island RDAC addresses a significant gap in advocacy efforts within New England, where Vermont remains the sole state without such a council. Advisory councils like this are crucial for creating a robust ecosystem of rare disease advocacy, empowering patients and families to actively participate in state policy formation.
Individuals interested in contributing to their state's rare disease initiatives can become involved through NORD's Rare Action Network®. For more information about NORD's new project RDAC and the role of Rare Disease Advisory Councils, visit their website at rarediseases.org.
With Rhode Island's bold move, the state sets a precedent that may inspire additional reforms across the nation, enhancing the quality of life for all affected individuals and fortifying their rightful place in the healthcare debate.
Topics Health）
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