North Carolina § 130A-33 - 65. Advisory Council on Rare Diseases; membership; terms; compensation; meetings; quorum.

§ 130A-33. 65. Advisory Council on Rare Diseases; membership; terms; compensation; meetings; quorum.

There is established the Advisory Council on Rare Diseases within the School of Medicine of the University of North Carolina at Chapel Hill to advise the Governor, the Secretary, and the General Assembly on research, diagnosis, treatment, and education relating to rare diseases. This Part shall be known as Taylor's Law Establishing the Advisory Council on Rare Diseases. For purposes of this Part, "rare disease" has the same meaning as provided in 21 U.S.C. § 360bb. Advisory Council Membership. Upon the recommendation of the Dean of the School of Medicine of the University of North Carolina at Chapel Hill, the Secretary shall appoint members to the advisory council as follows: A physician licensed and practicing in this State with experience researching, diagnosing, or treating rare diseases. A medical researcher with experience conducting research concerning rare diseases. A registered nurse or advanced practice registered nurse licensed and practicing in the State with experience treating rare diseases. One rare diseases survivor. One member who represents a rare diseases foundation. One representative from each academic research institution in this State that receives any grant funding for rare diseases research. The chairs of the Joint Legislative Oversight Committee on Health and Human Services, or the chairs' designees, shall serve on the advisory council. A member of the advisory council who is designated by the chairs of the Joint Legislative Oversight Committee on Health and Human Services may be a member of the General Assembly. The Secretary, or the Secretary's designee, shall serve as an ex officio, nonvoting member of the advisory council. Members appointed pursuant to subsection (b) of this section shall serve for a term of three years, and no member shall serve more than two consecutive terms. Members of the advisory council shall receive per diem and necessary travel and subsistence expenses in accordance with the provisions of G.S. 138-5 or G.S. 138-6 or travel and subsistence expenses in accordance with the provisions of G.S. 120-3.1, as applicable. All administrative support and other services required by the advisory council shall be provided by the School of Medicine of the University of North Carolina at Chapel Hill. Upon the recommendation of the Dean of the School of Medicine of the University of North Carolina at Chapel Hill, the Secretary shall select the chair of the advisory council from among the members of the council. The chair shall convene the first meeting of the advisory council no later than October 1, 2015. A majority of the council members shall constitute a quorum. A majority vote of a quorum shall be required for any official action of the advisory council. Following the first meeting, the advisory council shall meet upon the call of the chair or upon the request of a majority of council members. History (2015-199, s. 1; 2016-30, s. 3.) Editor's Note. - Session Laws 2015-199, s. 1, enacted this Part as G.S. 130A-33.52 and G.S. 130A-33.53. The sections in this Part have been renumbered as G.S. 130A-33.65 and G.S. 130A-33.66 at the direction of the Revisor of Statutes. Session Laws 2018-5, s. 10.7, as added by Session Laws 2018-97, s. 2.11, provides: "Notwithstanding G.S. 130A-33.65 (c), the terms of the initial members appointed to the Advisory Council on Rare Diseases (Council) within the School of Medicine of the University of North Carolina at Chapel Hill in accordance with S.L. 2015-199 shall end on July 1, 2023. A member appointed to fill a vacancy of an initial member of the Council shall serve the remainder of the unexpired term. Members appointed to the Council on or after July 1, 2023, shall serve for terms of three years in accordance with G.S. 130A-33.65 ." Session Laws 2018-41, s. 8(a), provides: "Notwithstanding the provisions of G.S. 130A-33.65(c) or any other provision of law, the terms of the current members of the Advisory Council on Rare Diseases are extended until July 31, 2023." Session Laws 2018-5, s. 1.1, provides: "This act shall be known as the 'Current Operations Appropriations Act of 2018.'" Session Laws 2018-5, s. 39.4, provides: "Except for statutory changes or other provisions that clearly indicate an intention to have effects beyond the 2018-2019 fiscal year, the textual provisions of this act apply only to funds appropriated for, and activities occurring during, the 2018-2019 fiscal year." Session Laws 2018-5, s. 39.7, is a severability clause. Effect of Amendments. - Session Laws 2016-30, s. 3, effective June 22, 2016, added the second sentence in subsection (a).