The National Economic Burden of Rare Disease Study

Posted February 26, 2021

The National Economic Burden of Rare Disease Study

The EveryLife Foundation for Rare Diseases has published its findings on the economic burden of rare diseases in the USA.

Through the advocacy work of our Community and Advocacy Director, Shani Weber, The Ehlers-Danlos Society was invited to share the Foundation’s survey questionnaire. Members of the EDS community in the USA contributed to the survey, helping to raise awareness.

The EveryLife Foundation for Rare Diseases report can be read HERE

The Foundation reports that:

The study is the first of its kind, providing the most comprehensive assessment of the total economic burden of rare diseases (RDs) in a single year. The results help to ensure that the experience of the rare disease community is reflected accurately in policy discussions. This powerful tool can also increase public awareness of the public health crisis of rare diseases.

Through this research, we estimated the economic cost of 379 rare diseases reached nearly $1 trillion in the U.S. in 2019.

And in summary concludes that:

These findings demand attention from researchers, policymakers, healthcare providers, employers. There is an urgent need to fund research, enhance awareness, and improve access to diagnosis, care, and treatment of rare diseases.

 Contact your elected representatives, share the Study findings, and urge Congress to support important rare disease appropriations priorities that would advance critical rare disease research and therapy development at the National Institutes of Health, the Centers for Disease Control and Prevention, and the Food and Drug Administration.”

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