Impact of the COVID-19 Pandemic on People Living With Rare Diseases and Their Families: Results of a National Survey.
Maurizio MacalusoXiaoting ChenThomas W FerkolPierce KuhnellHenry J KaminskiDavid W KimberlinMichael BenatarMirna Chehadenull nullPublished in: JMIR public health and surveillance (2024)
Self-reported COVID-19 was more frequent than expected and was associated with increased prevalence and severity of RD symptoms and greater use of medications. The pandemic negatively affected access to care and caused mood changes in the respondents and family members. Continued surveillance is necessary.