Rare Disease Network at UNC

Why Rare Disease?

While each rare disease may individually affect a small number of people, together rare diseases impact 10% of the global population. With more than 10,000 distinct rare diseases, what seems rare is, in truth, collectively common.

Each colored zebra in the above image represents a different rare disease, illustrating their collective prevalence in the general population.

The economic burden of rare diseases is staggering, representing one of the greatest untapped opportunities for innovation in health care. However, the challenge goes deeper than numbers. Because each condition is rare, patients are often isolated, and the knowledge about each condition is often very fragmented across sources. This makes it incredibly difficult for patients, clinicians, and researchers to find, understand, and act on the information they need most.

Our mission is to change that.

Our Mission

The UNC Rare Disease Network seeks to transform rare disease diagnosis, care, research, and education across UNC Health and the broader region. Launched through the collaborative efforts of the UNC Program for Precision Medicine in Health Care (PPMH) and the UNC National Organization for Rare Disorders (NORD) Center of Excellence, the Network’s purpose is to improve outcomes for individuals living with rare conditions by fostering collaboration among clinicians, researchers, educators, and patient advocates to address the unique challenges rare disease patients and communities face.