MN HF3676

Establishes the Minnesota Rare Disease Advisory Council on Rare Diseases in honor of Chloe Barnes, to be housed by the Council on Disability, with duties including developing resources on rare disease treatment, diagnosis, research, and education.

Council shall consist of at least 17 public members appointed by the governor (including physicians, nurses, hospital administrators, patients, caregivers, pharmacists, genetic counselors, and industry representatives), plus four legislative members and three ex officio members from the Department of Health and medical schools.

Council shall elect a chairperson and executive committee, appoint an executive director who may employ staff, and may establish subcommittees and work groups to fulfill council duties and objectives.

Council duties include developing resources on treatment quality and access, identifying best practices and barriers to care, addressing prior authorization obstacles, advising state agencies on rare disease policy, and issuing annual reports to legislative committees beginning January 1, 2020.

Revisor of statutes shall renumber the council statute from section 137.68 to section 256.4835 effective July 1, 2022; unexpended appropriated funds transfer to the council and Council on Disability's control.