MN HF684

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 (21 U.S.C. § 360bb).

Council membership includes public members appointed by the Board of Regents (physicians, nurses, hospital administrators, patients, caregivers, pharmacists, social workers, dentists, researchers, genetic counselors, and industry representatives) plus four legislators (two senators and two representatives) and ex officio members from the Department of Health and medical schools.

Initial appointments must be made by September 1, 2019, with the first council meeting convened by October 1, 2019; public members serve three-year terms except initial members serve staggered two, three, or four-year terms.

Council duties include developing resources and recommendations on rare disease treatment and access in Minnesota, identifying best practices from other states and nations, addressing health plan transition obstacles for rare disease patients, and consulting with state agencies on rare disease awareness and education.

Appropriates $150,000 in fiscal year 2020 and $150,000 in fiscal year 2021 from the general fund to the Commissioner of Human Services for transfer to the Board of Regents to support the advisory council.