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Welcome to the South Carolina Rare Disease Advisory Council

Rare Disease Needs Assessment

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Are you or someone you care about living with a rare disease? South Carolina’s Rare Disease Advisory Council (RDAC) welcomes your feedback on experiences navigating the disease. Your survey responses will be used to help develop and prioritize the SC RDAC’s efforts and initiatives.

We want to hear from you.

Rare Disease Advisory Council Meetings

A pen writing in a weekly planner

Our next quarterly meeting will be held on October 25, 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.


Rare Disease Symposium

Save the Date note next to push pins

Save the Date! The 2025 Rare Disease Symposium is scheduled for February 28, 2025 from 10:00 a.m. to 2:00 p.m. at Segra Park Club Lounge in Columbia, SC (1640 Freed Street, Columbia, SC 29201). Stay tuned for the full event details and open registration.

2024 Symposium News

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.