AN ACT ESTABLISHING AN ADVISORY COUNCIL ON RARE DISEASES WITHIN THE DEPARTMENT OF HEALTH AND HUMAN SERVICES.
Senate committee substitute to the 1st edition deletes all provisions of the previous edition and replaces it with the following.
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.
Changes the act's short and long titles.
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