The advisory council shall be governed by an executive committee elected by the members of the advisory council. One member of the executive committee must be the advisory council chairperson.
The advisory council shall consist of at least 17 public members who reflect statewide representation. Except for initial members, members are appointed by the governor. Four members of the legislature appointed as described below.
The governor shall appoint at least the following public members:
- three physicians licensed and practicing in the state with experience researching, diagnosing, or treating rare diseases, including one specializing in pediatrics;
- one registered nurse or advanced practice registered nurse licensed and practicing in the state with experience treating rare diseases;
- at least two hospital administrators, or their designees, from hospitals in the state that provide care to persons diagnosed with a rare disease. One administrator or designee appointed under this clause must represent a hospital in which the scope of service focuses on rare diseases of pediatric patients;
- three persons age 18 or older who either have a rare disease or are a caregiver of a person with a rare disease. One person appointed under this clause must reside in rural Minnesota;
- a representative of a rare disease patient organization that operates in the state;
- a social worker with experience providing services to persons diagnosed with a rare disease;
- a pharmacist with experience with drugs used to treat rare diseases;
- a dentist licensed and practicing in the state with experience treating rare diseases;
- a representative of the biotechnology industry;
- a representative of health plan companies;
- a medical researcher with experience conducting research on rare diseases;
- a genetic counselor with experience providing services to persons diagnosed with a rare disease or caregivers of those persons; and
- representatives with other areas of expertise as identified by the advisory council.
The advisory council shall include two members of the senate, one appointed by the majority leader and one appointed by the minority leader; and two members of the house of representatives, one appointed by the speaker of the house and one appointed by the minority leader.
The commissioner of health or a designee, a representative of Mayo Medical School, and a representative of the University of Minnesota Medical School, shall serve as ex officio, nonvoting members of the advisory council.
Members may be reappointed for up to two full additional terms according to the advisory council's operating procedures.
2022 Minn. Laws Chap. 98 Art. 13 Sec. 12 notes: Public members serving on the University of Minnesota's Advisory Council on Rare Diseases on June 30, 2022, are the initial public members of the Minnesota Rare Disease Advisory Council. The terms of the members begin on July 1, 2022. The governor must designate six members to serve a two-year term; six members to serve a three-year term; and five members to serve a four-year term. The governor may appoint additional members under Minnesota Statutes, section 137.68, subdivision 2, paragraph (b), clause (13), and must set their terms so that roughly one-third of the members' terms expire after two years, one-third after three years, and one-third after four years. Legislative members of the University of Minnesota's Advisory Council on Rare Disease serve on the Minnesota Rare Disease Advisory Council until appointing authorities appoint successors. The person serving as chair of the executive subcommittee of the University of Minnesota's Advisory Council on Rare Diseases shall convene the first meeting of the Minnesota Rare Disease Advisory Council by September 1, 2022.