NC S235

Establishes an Advisory Council on Rare Diseases within the Department of Health and Human Services to advise the Secretary on research, diagnosis, treatment, and education for rare diseases as defined in 21 U.S.C. § 360bb.

Council membership includes up to 5 physicians with rare disease experience, a medical researcher, a nurse, hospital administrators, 2 rare disease survivors, a pediatric caregiver, Board of Education representative, biostatistics and public health representatives, up to 3 patient organization representatives, and designees of legislative oversight committee chairpersons.

Members appointed under subsection (b) serve 3-year terms with a maximum of 2 consecutive terms; Secretary or designee serves as ex officio nonvoting member; all appointments must be made within 30 days of the effective date.

Council duties include coordinating statewide rare disease studies, advising on treatment and research, identifying best practices from other states, developing public awareness strategies, and submitting annual reports to the Joint Legislative Oversight Committee on Health and Human Services beginning January 1, 2016.

First council meeting must occur by October 1, 2015; members elect their own chairperson; majority vote of a quorum required for official action; Department provides all administrative support; members receive per diem and travel expenses.