Rare Disease Advocacy in South Carolina
Rare disease advocacy in South Carolina is critical to improving access to diagnostics, treatment, and coordinated care. Because key healthcare decisions are made at the state level, strong local advocacy helps ensure better coverage, resources, and outcomes for the rare disease community across South Carolina.
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State Organization
South Carolina Rare Disease Coalition
Website: https://southcarolinarare.wixsite.com/southcarolinarare
Point of Contact: Shea Linton
Email: SouthCarolinaRare@gmail.com
U.S. Congress Scorecard
See how South Carolina’s Members of Congress are supporting the rare disease community with this Legislative Scorecard.
RARE Disease Advisory Council
An Advisory Council was established in 2021.
See more information on established rare disease advisory councils.
Rare Disease Caucus
Current Bipartisan Rare Disease State Legislative Caucuses.
Don’t see your state? If you would like to be part of the process to start a rare disease state caucus, please reach out at advocacy@rareadvocates.org.
Newborn Screening in South Carolina
Newborn screening programs vary widely by state, leading to disparate health outcomes. While some states screen for thirty diseases, other states screen for over sixty.
RARE Young Adults
RARE Young Adults brings together motivated members of the rare disease community, ages 16–30, to build confidence, strengthen advocacy skills, and create meaningful impact in public policy.
South Carolina Advocacy Resources
Insurance Commissioner
- Michael Wise
mwise@doi.sc.gov
Department of Insurance
Board of Pharmacy Executive Director
- Kayce Shealy
kayce.shealy@llr.sc.gov
Health and Human Services
- Medicaid in South Carolina
- Contact: Eunice Medina
Eunice.Medina@scdhhs.gov
Department of State Health Services
COVID-19 Resources
State Legislature Calendar
State Legislature Website
Drug Utilization Board or P&T Committee
- P&T Committee Website
- Meeting Schedule: Meets quarterly (check website for schedule of meetings).
- Contact: SC Department of Health and Human Services Office of Programs: (803)-898-2066
- Established DUR Boards and P&T Committees
