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 public hearings, solicit comments from the general public, provide testimony on pending legislation and regulations, consult with experts to develop policy recommendations, research the impact of utilization management procedures on treatment access, and establish best practices for emergency planning related to rare diseases. Additionally, the council will evaluate and make recommendations to improve newborn screening programs and Medicaid coverage for rare disease medications, publish a list of publicly accessible resources, identify areas of unmet need for research, and distribute educational resources for healthcare providers.

Membership of the council will include a diverse set of 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. Members will be appointed by the governor and will serve terms of up to three years, with some initial members 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, with opportunities for public comment prior to submission. The council will hold regular meetings, including an initial meeting within the first ninety days after enactment, monthly meetings during the first year, and quarterly meetings thereafter. The act will take effect upon passage.