HJR115 Summary: Alabama Rare Disease Advisory Council

• Establishes the Rare Disease Advisory Council within the University of Alabama at Birmingham's School of Medicine to advise the Governor and Legislature on research, diagnosis, treatment, and education for rare diseases affecting approximately 400,000 Alabama citizens.

• Council membership consists of 14+ members including physicians, pediatricians, nurses, medical researchers, hospital administrators, academic institution representatives, Congressional district representatives from non-profit rare disease foundations, the State Health Officer, and four legislative members appointed by Senate and House leadership.

• Council duties include discussing diagnosis and treatment strategies, collecting data on rare disease costs and economic impact, coordinating collaborations among academic medical centers and funding agencies, and providing annual reports to the Legislature with policy recommendations.

• Members serve 3-year terms with a limit of two consecutive terms; initial appointments must be made within 60 days of resolution adoption; council meets at least quarterly with no member compensation.

• Appointing authorities must ensure council membership reflects the state's racial, gender, geographic, urban, rural, and economic diversity.