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 to improve patient access to care; and making recommendations to state agencies and insurers regarding the impact of prior authorization and other utilization management procedures on treatment and care.

Additionally, the council will establish best practices for emergency planning related to natural disasters and public health emergencies, evaluate and recommend improvements to newborn screening programs, and improve Medicaid coverage for rare disease patients. The council will also publish a list of existing resources related to rare diseases, identify areas of unmet need for research, and distribute educational resources for healthcare providers.

The council will consist of diverse members appointed by the governor, 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 serve terms of up to three years, with the possibility of four-year terms during the initial five 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. The council will hold regular meetings to engage with the public and stakeholders. This act will take effect upon passage.