Rare and Complex Diseases: Care and Resources

Course overview

There are over 10,000 known rare diseases, affecting 10% of the U.S. population (NIH NCATS, n.d.; NIH NCATS, 2023). Individually, rare diseases are scarce, but collectively, they are common and often aggressive, debilitating, and life-threatening. Although they are the zebras of diseases, they carry horse-sized hoofprints on the U.S. healthcare system and for those affected by them. Care and resources are key to researching, diagnosing, treating, and advocating for rare diseases. This course will focus on common barriers to care and resources and then provide some systemic approaches to both. This course will not discuss all available resources but will list some common rare disease organization sites for your reference.