(a) There is hereby established the West Virginia Advisory Council on Rare Diseases to advise state agencies on research, diagnosis, treatment, and education relating to rare diseases. (b) The council shall consist of 12 voting members, constituted as follows: (1) The Secretary of the Department of Health and Human Resources or his or her designee; […]
As used in this article: “Department” means the West Virginia Department of Health and Human Resources; “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 […]
The advisory council shall exercise the following duties to the degree that resources are available, including, but not limited to: (1) Coordinate statewide efforts for the study of the incidence of rare disease within the state;
In order to carry out the duties described in this article, the advisory council has the following powers: (1) To pursue and accept gifts, grants, and bequests of funds from individuals, foundations, corporations, federal government, government agencies, and other organizations or institutions to fund the activities of the advisory council;
The secretary at his or her discretion may provide the advisory council with administrative support reasonably necessary for the advisory council to carry out its duties. In addition, the secretary may make and sign any agreements and may do and perform any acts that are necessary to receive, accept, or secure gifts, grants, and bequests […]
There is hereby created a special revenue account in the State Treasury to be known as the Rare Disease Advisory Council Information Fund into which gifts, grants, and bequests may be received for the use of the advisory council to carry out its duties as specified in 16-5CC-3 of this code. The advisory council has […]
