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Welcome to the South Carolina Rare Disease Advisory Council

Rare Disease Advisory Council Meetings

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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.


 

Rare Disease Needs Assessment

Person holding a rare disease awareness day ribbon

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.

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.