This paper is in the following e-collection/theme issue:

Theme Issue: Novel Coronavirus (COVID-19) Outbreak Rapid Reports (1542) JMIR Theme Issue: COVID-19 Special Issue (2554) Infectious Diseases (non-STD/STI) (1726) Outbreak and Pandemic Preparedness and Management (1826) JMH Theme Issue: COVID-19 and Mental Health: Impact and Interventions 2023 (409) Cross-Sectional Studies in Public Health (431) Hygiene and Infection Prevention (374)

Published on in Vol 10 (2024)

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/48430, first published .
Impact of the COVID-19 Pandemic on People Living With Rare Diseases and Their Families: Results of a National Survey

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

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

Authors of this article:

Maurizio Macaluso1, 2 Author Orcid Image ;   Marc E Rothenberg2, 3 Author Orcid Image ;   Thomas Ferkol4 Author Orcid Image ;   Pierce Kuhnell1 Author Orcid Image ;   Henry J Kaminski5 Author Orcid Image ;   David W Kimberlin6 Author Orcid Image ;   Michael Benatar7 Author Orcid Image ;   Mirna Chehade8 Author Orcid Image ;   The Principal Investigators of the Rare Diseases Clinical Research Network – Cycle 49
Article Authors Cited by (4) Tweetations (5) Metrics Author Video

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  2. Llerena L, Nata Castro D, Rodriguez N, Silva Sánchez D. Open Source Web Application (HealthTest) for Emotional Health and Wellness Management in University Students: Development and Usability Study. Online Journal of Public Health Informatics 2025;17:e69413 View
  3. Schwendeman E, Kaminski H, Vanderver A, Wagner M, King E, Macaluso M. Data Sharing Experience, Guidance, and Resources From the Rare Diseases Clinical Research Network (RDCRN). Clinical and Translational Science 2025;18(9) View
  4. Wang Q, Guo L, Yang Y, He J. Characteristics of rare diseases cases: A summary analysis of hospitalized patients at a hospital in Western China from 2015 to 2023. Intractable & Rare Diseases Research 2025;14(4):266 View