Tag Archive: Rare Diseases

Rare Disease Day. Rare is Many, Rare is strong, Rare is proud.

The Ehlers-Danlos Society celebrates Rare Disease Day, 2021 

February 28 is Rare Disease Day, but what is a rare disease?  In Europe, a rare disease is defined as when it affects fewer than one in 2,000 people. In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people.  There are over 300 million people living with one or more
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The National Economic Burden of Rare Disease Study

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,
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