2023
DOI: 10.2196/preprints.48430
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Impact of the COVID-19 Pandemic on People Living With Rare Diseases and Their Families: Results of a National Survey (Preprint)

Maurizio Macaluso,
Marc E Rothenberg,
Thomas Ferkol
et al.

Abstract: BACKGROUND With more than 103 million cases and 1.1 million deaths, the COVID-19 pandemic has had devastating consequences for the health system and the well-being of the entire US population. The Rare Diseases Clinical Research Network funded by the National Institutes of Health was strategically positioned to study the impact of the pandemic on the large, vulnerable population of people living with rare diseases (RDs). … Show more

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