09/04/2026
NCDHHS is seeking patients, health care providers, researchers, and public health leaders interested in joining the NC Rare Disease Advisory Council.
This council advises the governor, NCDHHS and the General Assembly on research, diagnosis, treatment and education relating to rare diseases or conditions that affect fewer than 200,000 individuals nationwide. Approximately 95% of all rare diseases do not have an FDA approved drug treatment or cure.
Originally established in 2015, the NC Rare Disease Advisory Council was the first of its kind in the nation. The council was transferred to NCDHHS and reorganized by the NC General Assembly in 2026.
NCDHHS will be appointing 15 individuals who represent established membership categories to serve on the council beginning in 2027. Interested individuals are encouraged to submit a council interest form by Sept. 8.
The North Carolina Department of Health and Human Services is seeking interested residents to join the NC Rare Disease Advisory Council. This Council advises the Governor, NCDHHS and the General Assembly on research, diagnosis, treatment and education relating to rare diseases or conditions.
NCDHHS will be appointing 15 individuals who represent established membership categories to serve on the Council beginning in 2027. Interested individuals are encouraged to submit a Council interest form by Sept. 8, 2026.
Interest form: https://ow.ly/A9Bb50ZGB1L
More information: https://ow.ly/WyiJ50ZGB1N