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Information on Minnesota State Agencies, Boards, Task Forces, and Commissions

Compiled by the Minnesota Legislative Reference Library

Chloe Barnes Advisory Council on Rare Diseases

Active dates:2019 -

The University of Minnesota is requested to establish an advisory council on rare diseases to provide advice on research, diagnosis, treatment, and education related to rare diseases. The council must issue an annual report on its activities by January 1 of each year, beginning January 1, 2020.


A council on rare diseases was first proposed in the 2017-2018 session (HF2574/SF2786), but the provision that would have created the group was included in a large 2018 supplemental budget bill that was vetoed by Governor Mark Dayton (see Laws of Minn. 2018, chap. 201 (SF3656)).

In 2019 the legislature again proposed the council and in May Governor Tim Walz signed SF973 into law to form the council.

The council is named in memory of Chloe Barnes, a two-year-old girl from Hopkins, Minnesota who passed away from metachromatic leukodystrophy in 2010.


The advisory council may consist of public members appointed by the Board of Regents or a designee and four members of the legislature appointed as described below.

The Board of Regents or a designee is requested to appoint 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;
  • 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; and
  • a genetic counselor with experience providing services to persons diagnosed with a rare disease or caregivers of those persons.

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.

Initial appointments to the advisory council shall be made no later than September 1, 2019.

Members appointed Board of Regents or a designee shall serve for a term of three years, except that the initial members appointed shall have an initial term of two, three, or four years determined by lot by the chairperson. These appointees shall serve until their successors have been appointed.

Record last updated: 10/28/2019

Additional print information on this group may be available in the Library's collection of agency notebooks. Please contact a librarian for assistance. The Minnesota Agencies database is a work in progress.

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