Welcome to the South Carolina Rare Disease Advisory Council

Recent News

From Vision to Impact

As founding chair, Patrick Flume reflects on growing RDAC into a statewide resource for rare disease advocacy, education and connection.

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2026 Rare Disease Symposium

Stripes, science and solidarity at the 2026 Rare Disease Symposium

The SC Rare Disease Advisory Council brings together MUSC leaders with rare disease advocates, researchers and patients from across the state to drive research, resources and hope.

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Rare Disease Advisory Council Meetings

Meeting Details

Our next quarterly meeting will be held on Friday, November 13, 2026, at 9:00 a.m. The minutes of previous meetings are available on the RDAC Events page. 

November Quarterly Meeting (Teams Link)

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.

Contact

Fill out the form below if you have a question for SC RDAC, and we will contact you shortly.