Carolina Lupus Alliance

About the Carolina Lupus Alliance

The Carolina Lupus Alliance (CLA) is a growing, patient-led project focused on supporting the lupus community across North and South Carolina, especially individuals living in rural and medically underserved areas.

CLA was started by a nursing student living with Systemic Lupus Erythematosus (SLE) who was diagnosed as an adolescent while growing up in Hoke County, North Carolina, a medically underserved area. Her own experiences with lupus, specialty care, treatment, and navigating a complex chronic illness helped shape the idea behind CLA.

SLE is a chronic autoimmune disease in which the immune system mistakenly attacks the body's own healthy tissues. It can affect the kidneys, lungs, heart, nervous system, skin, joints, and other parts of the body. Lupus disproportionately affects women, especially women of color, and can also begin in childhood or adolescence.

Living with lupus is already complicated, but for people in rural communities, additional barriers can make navigating the disease even harder. Long drives to rheumatology clinics, limited transportation, long appointment waits, financial barriers, delays in diagnosis, and limited access to lupus-specific resources can all affect a patient's ability to receive quality care and feel supported.

North Carolina is home to some incredible rheumatologists and healthcare systems, but simply having great specialty care in the state does not mean that every patient can easily access it.

That is where we hope CLA can help.

Our vision goes beyond simply sharing educational content. We want to build a stronger and more connected lupus community across the Carolinas by working with patients, local organizations, community leaders, clinics, and healthcare systems.

We hope to work with individuals across rural towns and counties to create more opportunities for people with lupus to connect through in-person, hybrid, and virtual community events. Living with a chronic illness can be isolating, especially when there may not be another lupus patient, support group, or lupus-specific event nearby. We want to help create more of those opportunities locally.

We also hope to partner with Federally Qualified Health Centers, community health centers, primary care practices, universities, healthcare systems, and other organizations serving rural communities. One of our goals is to help connect providers with high-quality education around recognizing possible lupus symptoms, appropriate evaluation, patient education, and timely referral to rheumatology.

CLA is also strongly committed to evidence-based health education. We believe people living with lupus deserve reliable, understandable, and high-quality health information. Our educational content is supported by recent, high-quality peer-reviewed research and reputable clinical guidance. We never want our content to replace individualized medical care. Instead, we hope it helps patients better understand their health, ask questions, advocate for themselves, and make informed choices while continuing to follow the guidance and treatment plans developed with their healthcare providers.

What we hope will make CLA stand out is that we are patient-led, evidence-based, community-focused, collaborative, and intentionally centered around rural communities.

Get Involved

We are still in the early stages and are truly building from the ground up. We are looking for volunteers who are excited by that idea and want to help shape what CLA becomes, whether through community outreach, partnerships, education, design, communications, nonprofit development, or long-term leadership.

Ultimately, we want people living with lupus across the Carolinas to feel more connected, informed, supported, and equipped to navigate their health, regardless of where they live.