Welcome to the South Carolina Rare Disease Advisory Council

Rare Disease Advisory Council Meetings

Our next quarterly meeting will be held on July 26, 2024 at 9 a.m. The Teams meeting link is provided here: Teams meeting. The minutes of previous meetings are available under the Events page. Contact us at SCRDAC@musc.edu for more info.

Frequently Asked Questions (FAQs)

What is an RDAC?

A Rare Disease Advisory Council (RDAC) is an advisory body providing a platform for the rare disease community to have a stronger voice in state government. RDACs address the needs of patients and families affected by a rare disease by giving stakeholders an opportunity to make recommendations to state leaders on critical issues including the need for increased awareness, diagnostic tools and access to affordable treatments and cures.

What is a rare disease?

For purposes of this council, a rare disease is defined as one affecting fewer than 200,000 persons combined in a particular rare disease group.

How many rare diseases are there?

It is estimated that there are over 10,000 rare diseases affecting 30 million Americans, or 10 percent of the population, according to the National Organization for Rare Disorders (NORD).

Do I have a rare disease?

NORD offers a Rare Disease Database and website where you can search to see if your health condition qualifies as a rare disease.

How did I get a rare disease?

Approximately 80 percent of rare diseases are not acquired; they are inherited. They are caused by mutations or defects in genes.

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.