Frailties and critical issues in neuromuscular diseases highlighted by SARS-CoV-2 pandemic: how many patients are still “invisible”?

Giulia Ricci 1, Francesca Torri 1, Francesca Bianchi 1, Lorenzo Fontanelli 1, Erika Schirinzi 1, Elisa Gualdani 2, Paolo Francesconi 2, Delia Gagliardi 3, Gigliola Serra 4, Tiziana Mongini 5, Gabriele Siciliano 1

1 Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy; 2 Agenzia Regionale Toscana, ARS; 3 Foundation IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Neurology Unit, Milan, Italy; 4 Clinica di Neuropsichiatria Infantile, Dipartimento di Scienze Mediche, Chirurgiche e Sperimentali, Università degli Studi di Sassari, Sassari, Italy; 5 Department of Neurosciences Rita Levi Montalcini, Università degli Studi di Torino, Torino, Italy

DOI 10.36185/2532-1900-065

Almost 90% of neuromuscular diseases (NMDs) are classified as rare diseases, defined as conditions affecting less than 5 individuals in 10.000 (0.05%). Their rarity and diversity pose specific challenges for healthcare and research. Epidemiological data on NMDs are often lacking and incomplete. The COVID-19 pandemic has further highlighted the management difficulties of NMDs patients and the necessity to continue the program of implementation of standard of care. This article summarizes the Italian experience during pandemic.

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