SF 2786 (Hayden) Advisory Council on Rare Diseases (DE amendment)

SF 2786 requests the Board of Regents of the University of Minnesota to establish an advisory council on rare diseases to provide advice on research, diagnosis, treatment, and education related to rare diseases.

Subd. 1 requests the Board of Regents to establish the advisory council.

Subd. 2 describes the members that are to be appointed by the Board of Regents and includes four members of the legislature on the council as well as the commissioner of health, a representative of the Mayo Medical School, and a representative of the University of Minnesota Medical School to serve as ex officio nonvoting members. 

Subd. 3 requests the Board of Regents to convene the first meeting of the advisory council no later than September 1, 2018, and shall meet at the call of the chair or at the request of a majority of the council members.

Subd. 4 describes the duties of the councils as developing resources and recommendations relating to the quality of and access to treatment and services for persons with a rare disease; and advising in developing information and programs that relate to the diagnosis, treatment, and awareness of rare diseases.

Subd. 5 specifies that council members are subject to the Board of Regent’s policy on conflict of interests.

Subd. 6 requires the council to report to the legislature annually beginning January 1, 2019, on the council’s activities and other issues.