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. The council will conduct various activities, including convening public hearings to assess the needs of rare disease patients, providing testimony on pending legislation and regulations, consulting with experts to develop policy recommendations for improving patient access to care, and making recommendations for improvements in newborn screening and Medicaid coverage for rare disease treatments. The council will also focus on establishing best practices for emergency planning and reducing health disparities.

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 serving four years to ensure 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, with a draft available for public comment prior to submission. The council will hold regular meetings to facilitate public engagement and transparency. The act will take effect upon passage.