The bill establishes a "Rare Disease Advisory Council" within the Rhode Island Department of Health to address the needs of individuals affected by rare diseases, which are defined as conditions affecting fewer than 200,000 people in the U.S. The council aims to educate the public and government entities about the challenges associated with rare diseases, such as the lack of FDA-approved treatments and difficulties in obtaining accurate diagnoses. It will conduct public hearings, provide legislative testimony, and create educational resources for healthcare providers. The council will consist of diverse members, including representatives from academic institutions, healthcare providers, patient organizations, and individuals with rare diseases, with specific roles and appointments outlined for its members.

The bill specifies that council members will serve terms of up to three years, with provisions for staggered rotations to ensure continuity. It also includes new legal language that mandates the council to submit annual reports to key state officials detailing its activities and recommendations, as well as the ability to solicit funds and establish a restricted receipt account for its activities. Additionally, the council is required to meet regularly and ensure public accessibility to its meetings, promoting transparency and community engagement. The act will take effect upon passage, with the council's structure and operational guidelines aimed at improving care and reducing health disparities for rare disease patients.