The Cost of Rare Diseases in the US is Nearly $1 Trillion

EveryLife Foundation for Rare Diseases Releases Results of Its Burden of Illness Study

On February 25, 2021, the EveryLife Foundation for Rare Diseases shared the results of their 2019 burden of illness study on rare diseases.

Their research found that the estimated economic cost of 379 rare diseases in the United States totaled $966 billion in 2019, a figure that surpasses the economic burden estimated for many of the costliest chronic diseases described by the Centers for Disease Control and Prevention (CDC), including diabetes, heart disease, and cancer.

The EveryLife Foundation has created a special website to share the study results at

Read a press release with highlights from the study.

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