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

Maurizio Macaluso   ^{1, 2} , MD, DrPH ;   Marc E Rothenberg   ^{2, 3} , MD, PhD ;   Thomas Ferkol   ⁴ , MD ;   Pierce Kuhnell   ¹ , MS ;   Henry J Kaminski   ⁵ , MD ;   David W Kimberlin   ⁶ , MD ;   Michael Benatar   ⁷ , MD, PhD ;   Mirna Chehade   ⁸ , MD ;   The Principal Investigators of the Rare Diseases Clinical Research Network – Cycle 4   ⁹

¹ Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States

² Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, United States

³ Division of Allergy and Immunology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States

⁴ Department of Pediatrics, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States

⁵ Department of Neurology and Rehabilitation Medicine, George Washington University, Washington, DC, United States

⁶ Division of Pediatric Infectious Diseases, University of Alabama at Birmingham, Birmingham, AL, United States

⁷ Department of Neurology, University of Miami, Miami, FL, United States

⁸ Mount Sinai Center for Eosinophilic Disorders, Departments of Pediatrics and Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, United States

⁹ See Acknowledgments, New York, NY, United States