MS SB2156

Creates the Mississippi Rare Disease Advisory Council at the University of Mississippi Medical Center to advise the Legislature and governmental agencies on the needs of individuals with rare diseases.

Council membership must include representatives from academic research institutions, geneticists, physicians treating rare diseases, patients with rare diseases, caregivers, patient organizations, pharmacists, biotechnology industry, and health plan companies; members serve three-year terms.

Council duties include conducting public hearings, researching insurance access and specialist availability, evaluating newborn screening and Medicaid coverage, publishing resources on rare disease diagnosis and treatment, and training health care professionals on rare disease recognition.

Establishes a board of directors comprising the State Health Officer, Medicaid Executive Director, Insurance Commissioner, State Superintendent of Education, one industry representative, one patient representative, and the executive director to govern the council and appoint council members.

Requires the council to submit annual reports to the Governor and Legislature beginning July 1, 2025, detailing activities, progress, funding status, and recommendations for addressing rare disease patient needs in Mississippi; takes effect July 1, 2024.