MN SF973

Requests the University of Minnesota Board of Regents 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 federal law.

Council membership includes physicians, nurses, hospital administrators, patients/caregivers, patient organization representatives, social workers, pharmacists, dentists, biotechnology and health plan representatives, medical researchers, and genetic counselors, plus four legislative members and three ex officio members from health agencies.

Initial appointments due by September 1, 2019, with first meeting by October 1, 2019; public members serve three-year terms with initial staggered terms of two, three, or four years.

Council duties include developing resources and recommendations on rare disease treatment quality and access, identifying best practices from other states and countries, addressing health plan switching obstacles for rare disease patients, and submitting annual reports to legislative committees starting January 1, 2020.

Appropriates $50,000 in fiscal year 2020 and $50,000 in fiscal year 2021 from the general fund to the Board of Regents, with funding ending after fiscal year 2023.