The bill establishes a "Rare Disease Advisory Council" within the Rhode Island Department of Health, aimed at providing guidance and recommendations to educate the public, legislature, and other government agencies on the needs of individuals with rare diseases living in Rhode Island. The council will conduct various activities, including convening public hearings to assess the needs of rare disease patients, caregivers, and providers; providing testimony and comments on pending legislation and regulations; consulting with experts to develop policy recommendations for improving patient access to care; and making recommendations regarding the impact of prior authorization and other utilization management procedures on treatment and care.

Additionally, the council will establish best practices for continuity of care during emergencies, evaluate and recommend improvements to newborn screening programs and Medicaid coverage for rare disease treatments, publish a list of publicly accessible resources related to rare diseases, identify areas of unmet need for research, and distribute educational resources for healthcare providers. The council will also focus on reducing health disparities and ensuring continuity of care for patients transitioning from child/youth services to adult care.

Membership of the council will consist of diverse stakeholders, including representatives from academic research institutions, the Rhode Island Department of Health, the Rhode Island Medicaid agency, healthcare professionals with experience in rare diseases, patients, caregivers, and representatives from relevant organizations and industries. Members will be appointed by the governor and will serve terms of up to three years, with some initial members potentially serving four years to facilitate continuity.

The council is required to submit annual reports detailing its activities and recommendations to the governor, the speaker of the house, the president of the senate, and the chairs of the house and senate health and finance committees. The council will hold regular meetings to facilitate public engagement and transparency, with the initial meeting occurring within the first ninety days after enactment. The act will take effect upon passage.