North Carolina Advisory Council on Rare Diseases

The Rare Diseases Advisory Council (RDAC) was established in 2015 and transferred to and reconstituted within the North Carolina Department of Health and Human Services (NCDHHS) under Taylor’s Law (Session Law 2026-41) in 2026. The RDAC advises the Governor, the Secretary of Health and Human Services and the General Assembly on research, diagnosis, treatment and education relating to rare diseases.  

For purposes of RDAC, the law states that rare disease has the same meaning as provided in 21 U.S.C. § 360bb. Under 21 U.S. Code § 360bb, the term “rare disease or condition” means any disease or condition which (A) affects less than 200,000 persons in the United States, or (B) affects more than 200,000 in the United States and for which there is no reasonable expectation that the cost of developing and making available in the United States a drug for such disease or condition will be recovered from sales in the United States of such drug.

Interested in Serving on the RDAC?  

The Secretary of NCDHHS will be appointing individuals to serve on the council that meet one of the categories established under N.C.G.S. § 130A-33.65(b). Individuals who represent the membership categories below are encouraged to submit an RDAC Interest Form by September 8, 2026:

  • Two physicians licensed and practicing in this State with experience researching, diagnosing, or treating rare disease.  
  • One registered nurse or advanced practice registered nurse licensed and practicing in the State with experience treating rare diseases.
  • One researcher from an academic research institution in this State that receives any grant funding for rare diseases research.
  • One hospital administrator, or the hospital administrator's designee, representing a hospital in the State that provides care to persons diagnosed with a rare disease.
  • Two persons age 18 or older who have been diagnosed with a rare disease.
  • Two persons age 18 or older who are, or were previously, caregivers to a person diagnosed with a rare disease.
  • One representative of a rare disease patient organization that operates in the State.
  • One pharmacist licensed and practicing in this State with knowledge and experience regarding drugs used to treat rare diseases.
  • One representative of the life sciences, biotechnology, or biopharmaceutical industry that either focuses on research efforts related to the development of therapeutic products for persons diagnosed with a rare disease or has demonstrable understanding of the path to commercialization of such products.
  • Two representatives of a health benefit plan or health insurer, at least one of whom is a representative of a North Carolina Medicaid Managed Care health plan.
  • One genetic counselor with experience providing services to persons diagnosed with a rare disease or caregivers of persons diagnosed with a rare disease. 

RDAC Interest Form

About RDAC

Per Session Law 2026-41 describes the powers and duties of the RDAC: 

The advisory council shall have the following powers and duties:

  • Advise the Governor, the Secretary, and the General Assembly on all of the following:
    • Coordination of statewide efforts to study the incidence of rare diseases within the State and the status of the rare disease community.
    • Coordination of statewide efforts to increase public awareness and understanding of rare diseases.
    • Identification of policy issues related to rare diseases and the advancement of policy initiatives related to rare diseases at the State and federal levels.
    • The appropriation of State funds to facilitate increased public awareness of and improved treatment for rare diseases.
  • Report to the Secretary, the Governor, the Joint Legislative Oversight Committee on Health and Human Services, and the Fiscal Research Division on behalf of the General Assembly not later than January 1, 2016, and annually thereafter, on the activities of the advisory council and its findings and recommendations regarding rare disease research and care in North Carolina, including any recommendations for statutory changes and amendments to the structure, organization, and powers or duties of the advisory council.
  • In consultation with accredited medical schools, accredited schools of public health, and hospitals licensed to operate in the State that provide care to persons diagnosed with a rare disease, develop resources or recommendations regarding quality of and access to treatment and services available within the State for persons diagnosed with a rare disease. 
  • Advise and consult with the Department, the North Carolina Drug Utilization Review Board, and the Medicaid Preferred Drug List Review Panel in developing recommendations, resources, and programs relating to the diagnosis and treatment of rare diseases.
  • Identify additional relevant areas for the advisory council to study and evaluate.
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