About SC Rare
South Carolina Rare was founded to be a safe place for all members of the rare disease community no matter their background or rare disease affiliation. In my personal health journey, it took about a year and a half until I had the opportunity to connect with fellow rare disease patients for the first time. My belief is that although diagnoses, symptoms, and experiences may be different for each individual - many times, connecting with others can provide the much-needed support often important for members of the rare disease space. I hope that you are able to find that same support here in South Carolina Rare. We hope to provide resources and opportunities for all individuals to grow in their knowledge and connections within the rare disease space. Together we are stronger!
- Carol Shea Linton (Founder/CEO)
We believe all members of the rare disease community can change the world when given access to opportunities including the ability to connect with others
Our Mission
South Carolina Rare was established to provide a safe space for all members of the rare disease community to find resources and have opportunities to connect with fellow community members. We hope to serve patients and caregivers, whether undiagnosed, newly diagnosed, or experienced in their personal rare disease journeys.
Our Vision
Goals:
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Increased Access to Care for rare communities especially those within rural and underserved areas
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Increased conversations on the impact of rare disease within South Carolina
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Rare individuals and families feel supported and connected to others in the rare disease community
We hope to provide:
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Community Engagement Opportunities
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Advocacy Opportunities
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Resources
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Events
Meet Our South Carolina Rare Team
At South Carolina Rare, we aim to ensure that all individuals feel well represented in our community and advocacy. Our team is comprised of individuals from a variety of backgrounds and South Carolina regions. They have prior experience from many different areas of the rare disease space including legislative advocacy, clinical trials and research.
Carol Shea Linton
Founder/CEO
Carol Shea Linton is a patient advocate living with Immune Thrombocytopenic Purpura (ITP) and Hypermobile Ehlers-Danlos Syndrome (hEDS). She has served as a South Carolina Representative through the Young Adult Rare Representatives (YARR) organization since February 2022. As a member of the Rare Disease Diversity Coalition's (RDDC) Patient Caregiver Advisory Board and Patient Provider Caregiver Journey Working Group, she works to emphasize the importance of the patient voice. As a graduate of Winthrop University, she plans to attend medical school to pursue her goal of becoming a pediatrician. She hopes to use her personal experience living with multiple rare diseases to spread awareness about the issues facing the rare disease community. Raised in rural South Carolina, she seeks any opportunity to educate on the disadvantages surrounding a lack of access to care especially within underserved and underrepresented areas.
Virginia "Ginny" Maxwell
Founding Board Member
Virginia "Ginny" Maxwell is a patient advocate and caregiver to three children living with an ultra-rare skin disease. She is the Co-founder and Director of Patient Advocacy for the PRP Foundation. She also serves on the Executive Board for The Bleeding Disorders of South Carolina. Her passion and dedication to patient advocacy work began in 2016 after being invited to be a guest at a medical summit in Washington, D.C. Since then, she has committed herself to the work of patient advocacy actively engaging in advocacy efforts year-round. She has an extensive amount of knowledge and experience in state advocacy where she has spent a significant amount of time meeting with legislators advocating on behalf of initiatives that impact the rare disease community. Due to her important advocacy work, she was awarded the 2025 Making a Difference Award by the Bleeding Disorders Association of South Carolina.
Liam McCarthy
Founding Board Member
Liam McCarthy is a rare disease advocate with a personal connection to the work he does. Living with classic congenital adrenal hyperplasia (CAH), he is deeply committed to elevating patient voices and creating more inclusive, patient-centered systems. He serves as a Youth Ambassador for Rare Diseases International and participated in the 78th World Health Assembly to help bring attention to the experiences of young people living with rare conditions. He also recently joined Rare Diseases International's GNRD Review Group to provide feedback and ensure the framework is robust, inclusive, and globally relevant. Liam sits on advisory boards for both the FDA's Clinical Trial Transformative Initiative and the NIH Patient Advisory Board, where he contributes insights to help shape research and policy through a patient lens. At Neurocrine Biosciences, he supports the CAH community by advising on outreach efforts, creating patient-focused content, and sharing his story to raise awareness and connection.
