The South Carolina Rare Disease Advisory Council (RDAC) is committed to providing resources and support networks relating to diagnosis, treatment access, services, and education for members of the rare disease community. If you have a rare disease resource suggestion, please contact us at

General Resources

These resources offer helpful information to support a wide scope of audiences, including patients, caregivers, advocates, researchers, and health care providers:

Global Genes is a non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally.

National Organization for Rare Diseases promotes research, advocacy, awareness, and public policies that benefit rare disease communities nationwide.

Rare Advocacy Movement represents a rare disease patient and carer ecosystem that relies upon specialized global collaborations to address the needs of the patient and carer community from the community perspective.

Rare Diseases Clinical Research Network is designed to advance medical research on rare disease by providing support for clinical studies and facilitating collaboration, study enrollment, and data sharing.

Rare Disease Day is held annually on the last day of February to raise awareness and promote research and advocacy for the rare disease community.

Rare Disease Diversity Coalition unifies rare disease experts, health and diversity advocates, and industry leaders to identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare diseases on historically marginalized populations.

In addition to these organizations, SCRDAC has identified additional online resources that they have organized for patients, advocates, providers, and researchers, and categorized according to topic areas relevant to those specific groups.

We also encourage you to visit our Research page if you are seeking clinical research studies to learn about and participate in as a volunteer.

Advocate/Patient Resources

These resources are intended to benefit patients, advocates, and caregivers at any given stage of their rare disease journey: from seeking an official diagnosis and learning about rare disease symptoms and treatments, to managing the costs of healthcare, to promoting advocacy and awareness. 

Provider/Researcher Resources

These resources are intended to support clinicians and researchers who are seeking support at various stages of their clinical practices and research studies: from identifying current diagnosis and treatment methodologies for rare disease patients, to collaborating on research and registry programs, to learning how to improve patient treatment and care.