MN SF2786

Establishes the Chloe Barnes Advisory Council on Rare Diseases under the Board of Regents of the University of Minnesota to advise on research, diagnosis, treatment, and education related to rare diseases as defined by United States Code, title 21, section 360bb

Council membership includes physicians, nurses, hospital administrators, patients, caregivers, patient organization representatives, social workers, pharmacists, and industry representatives appointed by the Board of Regents, plus four legislative members appointed by senate and house leadership

Initial council appointments must be completed by July 1, 2018, with the first meeting held no later than September 1, 2018; public members serve three-year terms except initial appointees serve staggered two, three, or four-year terms

Council duties include developing resources and recommendations on quality and access to rare disease treatment, identifying best practices from other states, addressing obstacles for patients changing health plans, and advising state agencies on public health programs related to rare diseases

Council must submit annual reports beginning January 1, 2019, to legislative committees with jurisdiction over higher education and health care policy on council activities and other relevant issues