AN ACT ESTABLISHING AN ADVISORY COUNCIL ON RARE DISEASES WITHIN THE SCHOOL OF MEDICINE OF THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL. Enacted August 5, 2015. Effective August 1, 2015.
Summary date: Aug 10 2015 - View summary
Summary date: Jun 30 2015 - View summary
Senate committee substitute makes the following changes to the 1st edition.
Places the Advisory Council on Rare Diseases (Council) within the UNC-Chapel Hill School of Medicine instead of the Department of Health and Human Services and makes conforming changes. Specifies that the Council will also advise the Governor and the General Assembly on issues related to rare diseases. Amends the membership of the Council. Sets member terms at three years and prohibits serving more than two consecutive terms. Changes the method for determining the chairperson. Limits the Council's powers and duties to: (1) advising on coordinating statewide efforts for the study of the incidence of rare diseases in the state and the status of the rare disease community; and (2) reporting to the Secretary, Governor, and Joint Legislative Oversight Committee on Health and Human Services by January 1, 2016, and annually thereafter, on the council's activities, and its finding and recommendations on rare disease research and care in the state. Requires all appointments to the Council to be made no later than 30 days after the effective date of the act.
Changes the act's effective date from July 1, 2015, to August 1, 2015.
Changes the act's long title.
Summary date: Apr 17 2015 - View summary
Enacts new Part 5, Advisory Council on Rare Diseases, in Article 1B of GS Chapter 130A. Establishes the Advisory Council on Rare Diseases (Council) to advise the Secretary of Health and Human Services on research, diagnosis, treatment, and education relating to rare diseases. Sets out membership requirements, including ex officio members, and requires appointments to the Council to be made no later than 30 days after the effective date of the section. Sets out other provisions concerning the Council's functioning. Establishes the Council's 10 powers and duties, including coordinating statewide efforts for the study of the incidence of rare disease within the state and the status of the rare disease community; researching and identifying priorities relating to the quality and cost‑effectiveness of, and access to, treatment and services provided to persons with rare diseases in the state and developing policy recommendations on those issues; and identifying best practices for rare disease care from other states and at the national level that will improve rare disease care in this state. Effective July 1, 2015.