SCRDAC Home

Welcome to the South Carolina Rare Disease Advisory Council

2025 Rare Disease Symposium

Seven adults in business dress clothes smile for a group photo.

Thank you to everyone who attended our second annual Rare Disease Symposium held at Segra Park in Columbia, SC, on February 28, 2025 (Rare Disease Day). Researchers, patient advocates, healthcare professionals, and community leaders met in person and virtually to highlight the latest advancements in rare disease research, discuss critical unmet needs in the rare disease community, and hear first-hand from advocacy groups and caretakers.

Learn More

Rare Disease Advisory Council Meetings

A pen writing in a weekly planner

Our next quarterly meeting will be held on Friday, April 11, 2025, at 9:00 a.m. The Teams meeting link is provided here: RDAC Quarterly Teams Meeting . The minutes of previous meetings are available on 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.