The bill introduces the creation of a Rare Disease Advisory Council within the Rhode Island Department of Health, aimed at addressing the challenges faced by individuals with rare diseases, which are conditions affecting fewer than 200,000 people in the U.S. The council will be responsible for convening public hearings, providing testimony on legislation, consulting with experts, researching policy recommendations, and establishing best practices for emergency planning and continuity of care for rare disease patients. It will also evaluate and make recommendations to improve newborn screening programs, Medicaid coverage for rare disease drugs, and identify educational resources for healthcare providers. The council's membership will be diverse, including stakeholders from various sectors such as academic institutions, the Rhode Island Department of Health, Medicaid agency, insurance division, and representatives of patients, caregivers, and the biopharma industry, all appointed by the governor.

The bill specifies that the council will include a representative of a health plan company and a member of the scientific community engaged in rare disease research, with members serving terms of no longer than three years, except for an initial period allowing up to four years to ensure staggered rotation. In case of a vacancy, it will be filled following the same requirements. The council is obliged to submit an annual report detailing its activities, progress, and recommendations, and is authorized to solicit funds for its activities, which must be placed in a restricted receipt account. Regular meetings are mandated, initially monthly for the first year and then quarterly, with provisions for public input and a public website for meeting information and comments. The act will be effective upon passage.