MS HB616

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

Council membership must include at least 2 academic researchers, 2 geneticists, 1 genetic counselor, 1 nurse, 2 physicians, 2 hospital administrators, 2 persons with rare diseases, 1 caregiver, 3 patient organization representatives, 1 pharmacist, 1 biotechnology representative, 1 health plan representative, and 1 medical researcher.

Council duties include convening public hearings, developing policy recommendations on insurance access and specialist availability, evaluating newborn screening and Medicaid coverage programs, publishing publicly accessible resources, and establishing training policies for healthcare professionals on rare disease recognition and treatment.

Council is governed by a board of directors comprising the executive director and 6 appointed members including the State Health Officer, Medicaid Director, Insurance Commissioner, State Superintendent of Education, one industry representative, and one patient representative.

Council must submit annual reports to the Governor and Legislature beginning July 1, 2025, detailing activities, funding status, and recommendations for addressing rare disease patient needs; initial council and board meetings required before October 1, 2024.