West Virginia Code 16-5CC-3 – Duties of the advisory council
The advisory council shall exercise the following duties to the degree that resources are available, including, but not limited to:
Terms Used In West Virginia Code 16-5CC-3
- board: means a board of health serving one or more counties or one or more municipalities or a combination thereof. See West Virginia Code 16-1-2
- Department: means the West Virginia Department of Health and Human Resources. See West Virginia Code 16-5CC-2
- Joint committee: Committees including membership from both houses of teh legislature. Joint committees are usually established with narrow jurisdictions and normally lack authority to report legislation.
- Rare disease: means any disease which affects fewer than 200,000 people in the United States and is known to be substantially under-diagnosed and unrecognized as a result of lack of adequate diagnostic and research information, including diseases known as "orphan diseases" for research purposes. See West Virginia Code 16-5CC-2
- Secretary: means the Secretary of the West Virginia Department of Health and Human Resources. See West Virginia Code 16-5CC-2
- State: when applied to a part of the United States and not restricted by the context, includes the District of Columbia and the several territories, and the words "United States" also include the said district and territories. See West Virginia Code 2-2-10
(1) Coordinate statewide efforts for the study of the incidence of rare disease within the state;
(2) Act as the advisory board to the secretary and the West Virginia Legislature on research, treatment, and education relating to rare diseases;
(3) Research and identify priorities relating to the quality of, and access to, treatment and services provided to persons with rare diseases in the state;
(4) Develop, in conjunction and cooperation with the state’s medical schools, policy recommendations relating to the quality of, and access to, treatment and services provided to persons with rare diseases in the state;
(5) Advise, consult, and cooperate with other offices of the department, other agencies of state government, and patient-based organizations in the development of information and programs of benefit to the public and the health care community relating to the diagnosis, treatment, and awareness of rare diseases;
(6) Identify best practices for rare disease care as implemented in other states and at the national level that will improve rare disease care in the state;
(7) Develop recommendations for effective strategies to raise public awareness of rare diseases in the state;
(8) Develop recommendations for best practices for ensuring that health care providers are sufficiently informed of the most effective strategies for recognizing and treating rare disease; and
(9) Report to the secretary and the Joint Committee on Health not later than January 1, 2021, and annually thereafter on the activities of the advisory council and its findings and recommendations regarding rare disease research and care in West Virginia, including any recommendations for statutory changes and amendments to the structure, organization, and powers and duties of the advisory council. The advisory council shall terminate on June 30, 2025.