NC H823

Establishes the Advisory Council on Rare Diseases within the University of North Carolina at Chapel Hill School of Medicine to advise the Governor, Secretary, and General Assembly on rare disease research, diagnosis, treatment, and education.

Council membership includes a licensed physician with rare disease experience, a medical researcher, a registered or advanced practice nurse, a rare disease survivor, a rare disease foundation representative, representatives from academic research institutions receiving rare disease research grants, and chairs of the Joint Legislative Oversight Committee on Health and Human Services.

Members serve three-year terms with a maximum of two consecutive terms and receive per diem and travel expenses; the Secretary selects the chair upon recommendation of the School of Medicine Dean.

Council must hold its first meeting by October 1, 2015, and requires a majority quorum for official action; all administrative support provided by the School of Medicine.

Council shall report annually to the Secretary, Governor, and Joint Legislative Oversight Committee on rare disease research and care in North Carolina, including recommendations for statutory changes.