SF4045 Summary

• Establishes the Minnesota Rare Disease Advisory Council as an independent entity (previously University of Minnesota request) to advise on policies, access, equity, research, diagnosis, treatment, and education related to rare diseases.

• Requires the advisory council to consist of at least 17 public members appointed by the governor, including physicians, nurses, hospital administrators, patients/caregivers, and industry representatives, plus 4 legislative members appointed by legislative leadership.

• Transfers authority and administrative support from the Board of Regents to the Council on Disability; council shall appoint an executive director and establish executive committee and subcommittees.

• Expands council duties to include developing resources on rare disease treatment access, identifying best practices, addressing prior authorization barriers, advising state agencies, advancing policy initiatives, and issuing grants.

• Renumbers the council statute from Minnesota Statutes section 137.68 to section 256.4835 effective July 1, 2022; transfers existing University of Minnesota council members as initial members with staggered term lengths.