{"data":{"id":"us-nc/n.c.-gen.-stat.-130a-33.65","jurisdiction":"us-nc","citation":"N.C. Gen. Stat. § 130A-33.65","heading":"Advisory Council on Rare Diseases; membership; terms; compensation; meetings; quorum.","body":"(a)\tThere 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.\n(b)\tAdvisory Council Membership. -\n(1)\tUpon 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:\na.\tA physician licensed and practicing in this State with experience researching, diagnosing, or treating rare diseases.\nb.\tA medical researcher with experience conducting research concerning rare diseases.\nc.\tA registered nurse or advanced practice registered nurse licensed and practicing in the State with experience treating rare diseases.\nd.\tOne rare diseases survivor.\ne.\tOne member who represents a rare diseases foundation.\nf.\tOne representative from each academic research institution in this State that receives any grant funding for rare diseases research.\ng.\tOne parent of a childhood rare disease survivor.\n(2)\tThe 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.\n(3)\tThe Secretary, or the Secretary's designee, shall serve as an ex officio, nonvoting member of the advisory council.\n(c)\tMembers appointed pursuant to subsection (b) of this section shall serve for a term of three years, and no member shall serve more than three consecutive terms.\n(d)\tMembers 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.\n(e)\tAll 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.\n(f)\tUpon 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.\n(g)\tThe 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. (2015-199, s. 1; 2016-30, s. 3; 2022-74, s. 9G.5(a).)","path":["Chapter 130A. Public Health.","Article 1B. Commissions and Councils.","Part 6. Taylor's Law Establishing the Advisory Council on Rare Diseases."],"source_url":"https://www.ncleg.gov/EnactedLegislation/Statutes/HTML/BySection/Chapter_130A/GS_130A-33.65.html","current_through":"S.L. 2026-30","vintage":"","retrieved_at":"2026-08-27T18:20:37Z","sha256":"9e3d15cc5f79552c9e075bbd2cb34a587383cde2587fa46917af2a9536e82ca5","source_id":"us-nc","stale":false,"prev":"us-nc/n.c.-gen.-stat.-130a-33.64","next":"us-nc/n.c.-gen.-stat.-130a-33.66"},"notice":"GroundRules: Original legal text. Not legal advice."}