The Cost of Delayed Diagnosis: 2023 RARE Advocacy Summit Session

October 27, 2023

As part of the Legislative Action track from the 2023 RARE Advocacy Summit, this panel, The Cost of Delayed Diagnosis – What Came After the National Economic Burden of Rare Disease Study, takes a look at how delayed diagnosis affects healthcare costs in the United States. EveryLife Foundation’s National Economic Burden of Rare Disease Study released critical data on the economic cost of 379 rare diseases and estimated the total cost of rare disease in 2019 at nearly $1 trillion in the US. This session includes a high-level overview of the data and provides the groundwork for what is coming next in the Cost of Delayed Diagnosis in Rare Disease: A Health Economics Study.

Shannon von Felden
Senior Director of Advocacy, EveryLife Foundation

Kim Stephens
Executive Director, Joseph Muenzer’s MPS Research and Treatment Center of UNC

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