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Pandemic preparedness needs for children with rare diseases and their families: A perspective of COVID-19 experiences

People living with rare diseases had a high risk of negative health outcomes due to COVID-19. Pandemic preparedness will ensure best practice procedures and optimal outcomes during future pandemic events. This paper sought to understand the needs of children with rare diseases during the COVID-19 pandemic to inform preparation for future pandemic and disaster events. First, impacts and outcomes from the COVID-19 pandemic on people living with rare disease were identified in the literature.

Citation:
Keeley J, Stroobach A, Huston M, Wilson A, Lam J, Withers A, van Veldhuisen C, Baynam G, Downs J. Pandemic preparedness needs for children with rare diseases and their families: A perspective of COVID-19 experiences. Rare; 2024;2.

Keywords:
Rare disease; Pandemic preparedness; COVID-19; Neuromuscular disorders; Bronfenbrenner’s socio-ecological systems model

Abstract:
People living with rare diseases had a high risk of negative health outcomes due to COVID-19. Pandemic preparedness will ensure best practice procedures and optimal outcomes during future pandemic events. This paper sought to understand the needs of children with rare diseases during the COVID-19 pandemic to inform preparation for future pandemic and disaster events. First, impacts and outcomes from the COVID-19 pandemic on people living with rare disease were identified in the literature.