The Systemic Impact of Rare and Complex Diseases

Course overview

Rare diseases affect 10% of the U.S. population but account for more than $1.2 trillion in annual healthcare costs (NIH NACTS, 2023). This is about one-fourth to one-third of overall U.S. healthcare costs (Tisdale, 2021). The systemic impact of rare diseases has robust burdens, affecting patients and families, healthcare systems, employment workforces, and socioeconomic and government sectors. One is not mutually likely to be medically gaslit when providers are trying to diagnose invisible complex and rare autoimmune conditions exclusive of the other. However, the true systemic impact of rare diseases is not fully known. Thus, this renders rare diseases largely invisible to those who do not suffer from them and to the overall systems impacted by them.