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 public hearings, provide testimony on pending legislation and regulations, consult with experts, and research best practices to enhance patient access to care and treatment. It will also focus on improving newborn screening programs, Medicaid coverage for rare disease medications, and ensuring continuity of care during emergencies. The council is tasked with publishing a list of existing resources related to rare diseases and identifying areas for research collaboration to address unmet needs in the rare disease community.

Membership of the council will include a diverse group of stakeholders, such as 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 potentially 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. It will hold regular meetings to engage with the public and gather input on its work. The act will take effect upon passage.