Bill > H5023

This bill establishes a Rare Disease Advisory Council within Rhode Island's Department of Health to provide comprehensive support and guidance for individuals affected by rare diseases. The council, composed of 14 diverse members appointed by the governor, will include representatives from healthcare, research, patient advocacy, and government sectors, as well as patients and caregivers with direct experience with rare diseases. The council's primary responsibilities include conducting public hearings to understand patient needs, providing testimony on relevant legislation, consulting experts to develop policy recommendations, researching healthcare access and coverage challenges, establishing emergency care protocols, evaluating newborn screening programs, improving Medicaid coverage for rare disease treatments, publishing accessible resources, identifying research opportunities, distributing educational materials for healthcare providers, and addressing health disparities. The council will be required to submit annual reports to state leadership detailing its activities and recommendations, with an initial report due within one year of establishment. Members will serve three-year terms, with initial members potentially serving up to four years to ensure knowledge transfer. The council will meet monthly in its first year and quarterly thereafter, maintaining transparency through public meetings and a dedicated website for sharing information and receiving public input. A rare disease is defined in the bill as a condition affecting fewer than 200,000 people in the United States.

Health and Social Services

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