Impact of the COVID-19 Pandemic on People Living With Rare Diseases and Their Families: Results of a National Survey

In May 2020, the National Institutes of Health-funded Rare Diseases Clinical Research Network (RDCRN) launched an online survey to find out how the COVID-19 pandemic impacted individuals with rare diseases, their families, and their caregivers. Click here to learn more.

Results from the survey have been published in the Journal of Medical Internet Research (JMIR) Public Health and Surveillance (PHS). Insights from the survey - including access to care, medication use, and mental and physical well-being - highlight the unique challenges faced by this population and how we can better support them. Click here to view the published article.


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