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About the Council

South Carolina Governor Henry McMaster established the South Carolina Rare Disease Advisory Council in 2022 to serve as an advisory body to the governor and SC legislature. Our focus is on research, diagnosis, treatment, and education regarding rare diseases and their economic impact on the state.

Mission

The council shall advise the Governor, the General Assembly, and other stakeholders on research, diagnosis, treatment, and education related to rare diseases.

Membership

The council is composed of fifteen members and intended to be broadly representative of stakeholders. Each position is appointed by statewide leadership including the President of the Medical University of South Carolina (MUSC), the Dean of the University of South Carolina (UofSC) School of Medicine, the Director of the Department of Health and Environmental Control (DHEC), the Director of the Department of Health and Human Services (DHHS), the Executive Director of the South Carolina Hospital Association (SCHA), the Executive Director of the South Carolina Primary Healthcare Association (SCPHA), and the Executive Director of the State Public Benefit Authority (SPBA).

Responsibilities of the Advisory Council

  • Solicit comments from stakeholders, including patients and patient caregivers in South Carolina impacted by rare diseases, to assess the needs of rare-disease patients, caregivers, and providers in the State.
  • Consult with experts on rare diseases to develop recommendations to improve patient access to and quality of rare-disease specialists, affordable and comprehensive health care coverage, relevant diagnostics, timely treatment, and other needed services.
  • Research and identify priorities related to treatments and services provided to persons with rare diseases in South Carolina and develop recommendations that include safeguards against discrimination for these populations on such issues, including disaster and public health emergency-related planning.
  • Publish a list of existing, publicly accessible resources on research, diagnosis, treatment, and education relating to the rare diseases in South Carolina.
  • Identify and distribute educational resources to foster recognition and optimize treatment of rare diseases in South Carolina.
  • Identify best practices to reduce health disparities and achieve health equity in the research, diagnosis, and treatment of rare diseases in South Carolina.
  • Report annually (by June 30) to the Governor, the Chairman of the Senate Finance Committee, the Chairman of the Senate Medical Affairs Committee, the Chairman of the House Ways and Means Committee, and the Chairman of the House Medical, Military, Public and Municipal Affairs Committee.

Meet the Council Members

Find bios and headshots of the current council members.

 

RDAC Annual Reports

2024 Progress Report (PDF)

Contact

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