The proposed bill establishes a "Rare Disease Advisory Council" within the Rhode Island Department of Health to address the needs of individuals affected by rare diseases, defined as those impacting fewer than 200,000 people in the U.S. The council will include a diverse group of stakeholders such as healthcare professionals, patients, caregivers, and state agency representatives. Its primary responsibilities will involve conducting public hearings to assess the needs of rare disease patients, providing legislative testimony, and developing policy recommendations to improve access to care. Key insertions in the bill include the establishment of Chapter 87.1, which outlines the council's purpose, activities, and membership requirements, as well as a focus on enhancing newborn screening programs and improving Medicaid drug coverage.

Additionally, the bill specifies that the council will consist of members with expertise in rare disease treatments, including a pharmacist, a biopharma industry representative, and a health plan company representative. Council members will serve three-year terms, with an initial provision for a four-year term to ensure continuity. The council is required to submit annual reports detailing its activities and recommendations, hold its first meeting within 90 days of enactment, and maintain transparency through public access to meeting updates. The council will also have the authority to solicit funds and establish a restricted receipt account to support its activities, ultimately aiming to enhance the state's response to the challenges faced by individuals with rare diseases.