2-15-2232. Rare disease advisory council duties -- meetings -- reports -- funding. (1) To benefit individuals impacted by rare diseases in the state, the advisory council shall perform the following duties:

(a) convene public hearings, make inquiries, and solicit public comment to assist the advisory council in surveying the needs of rare disease patients, caregivers, and providers in the state;

(b) consult with experts on rare diseases to develop policy recommendations for improving patient access to and quality of rare disease specialists, affordable and comprehensive health care coverage, relevant diagnostics, timely treatment, and other needed services;

(c) publish on the department of public health and human services' website:

(i) a list of existing, publicly accessible resources on research, diagnosis, treatment, and education related to rare diseases in the state; and

(ii) meeting minutes, notice of upcoming meetings, and opportunities for the submission of public comment to the advisory council;

(d) identify areas of unmet need for research and opportunities for collaboration with stakeholders and rare disease advisory councils in other states that can inform future studies and work done by the advisory council; and

(e) identify and distribute educational resources to health care providers to foster recognition and optimize treatment of rare diseases in the state.

(2) (a) The initial meeting of the advisory council must be held within 90 days after July 1, 2025.

(b) For the first year after the advisory council is established, the advisory council shall meet no less than once a month in person or remotely for a length of time established by the presiding officer.

(c) After the first year of the advisory council's operation, the advisory council shall meet no less than once a quarter in person or remotely as determined by the presiding officer.

(3) Within 1 year after July 1, 2025, and annually thereafter, the council shall submit a report to the governor and, in accordance with 5-11-210, to the legislature and the children, families, health, and human services interim committee describing:

(a) the activities and progress of the advisory council related to the duties described in subsection (1);

(b) the status of the funding of the advisory council, including grants that are sought, accepted, or used; and

(c) recommendations to the governor and legislature on ways to address the needs of individuals living with rare diseases in the state.

(4) The advisory council may seek gifts, donations, grants, and other sources of funding to support its activities.