MN HF2574

Board of Regents of the University of Minnesota is requested to establish the Chloe Barnes Advisory Council on Rare Diseases to provide advice on research, diagnosis, treatment, and education related to rare diseases as defined in United States Code, title 21, section 360bb.

Council membership includes public members appointed by the Board of Regents (physicians, nurses, hospital administrators, patients, caregivers, patient advocates, social workers, pharmacists, and industry representatives) plus four legislators (two senators and two representatives) and three ex officio nonvoting members.

Initial appointments must be made by July 1, 2018, with the first meeting convened by September 1, 2018; public members serve three-year terms except initial members serving staggered two, three, or four-year terms determined by lot.

Council duties include developing resources and recommendations on quality of and access to rare disease treatment and services, identifying best practices from other jurisdictions, addressing health plan transition problems for patients with rare diseases, and advising state agencies on rare disease programs and awareness.

Advisory council must submit annual reports to legislative committees with jurisdiction over higher education and health care policy beginning January 1, 2019, and an unspecified amount from the general fund is appropriated to the Board of Regents for fiscal year 2019.