The proposed 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, provide testimony on pending legislation and regulations, consult with experts, and research best practices to improve patient access to care and treatment. It will also focus on evaluating and making recommendations to improve newborn screening programs, Medicaid coverage for rare disease medications, and ensuring continuity of care during emergencies.

The council's membership will include a diverse set of stakeholders, including healthcare professionals, patients, caregivers, and representatives from relevant organizations. All members will be appointed by the governor and will serve terms of up to three years, with provisions for staggered terms during the initial five years. 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, ensuring transparency and public engagement through open meetings and a dedicated website. This initiative aims to address the unique challenges faced by the rare disease community in Rhode Island.