The bill introduces the formation of the Rare Disease Advisory Council in Rhode Island, which will be situated within the Department of Health. This council is responsible for advising on the needs of individuals with rare diseases by engaging in various activities such as public education, policy recommendation development, research on insurance impacts, emergency planning, newborn screening, and Medicaid coverage improvements. The council will consist of a diverse group of members, including healthcare professionals, patients, caregivers, and representatives from relevant organizations, all appointed by the governor and the council chair. The chair, who is appointed by the governor and cannot hold any government position within Rhode Island, will oversee the appointment of new members, including a pharmacist, a biopharma industry representative, a health plan company representative, and a scientific community member.

Operational details of the council are also specified in the bill, including funding mechanisms, meeting schedules, public engagement, and term limits for members. The council is expected to convene within 90 days of the bill's enactment, meet monthly in the first year and quarterly thereafter, and maintain a public website. The initial chair will serve a three-year term, with subsequent chairs elected every two years. Members are generally limited to three-year terms, with some flexibility in the initial five years to ensure continuity. The council is also tasked with producing an annual report for the governor and relevant committees, which will outline its activities, funding status, and recommendations. The act will be effective immediately upon passage.