Join NC’s Rare Disease Advisory Council to Influence Health Policies

North Carolina Calls for Participation in Rare Disease Advisory Council

The North Carolina Department of Health and Human Services (NCDHHS) is extending an invitation to residents with an interest in rare diseases to become part of the NC Rare Disease Advisory Council. This Council plays a critical role in advising state leaders, including the Governor and the General Assembly, on matters related to the research, diagnosis, treatment, and education of rare diseases.

NC Health and Human Services Secretary Dev Sangvai emphasized the importance of the Council’s work: “This council will bring together patients, health care providers, researchers and public health leaders to ensure people with rare diseases are not overlooked.” He further noted that coordinated efforts can help identify care gaps and foster solutions that enhance the health and well-being of all residents in North Carolina.

Since its inception in 2015, the North Carolina Rare Disease Advisory Council has been a pioneering initiative in the United States. The Council underwent reorganization in 2026 under Taylor’s Law (Session Law 2026-41) and was integrated into the NCDHHS. The department is set to appoint 15 members from predefined categories to join the council starting in 2027. Individuals with a keen interest are encouraged to submit a council interest form by September 8, 2026.

Rare diseases are conditions affecting fewer than 200,000 individuals nationwide. Alarmingly, about 95% of these diseases currently lack an FDA-approved treatment or cure.

For further details, visit the North Carolina Advisory Council on Rare Diseases webpage.