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Since February 2020 the SARS-CoV-2 virus pandemic caused the reduction of spaces and medical and nurse staff dedicated to outpatients because of the urgent needs in the intensive, sub-intensive, and ward units in Lombardia region in Italy. In our Centre we regularly follow patients with hereditary anemias (ThSA), and hemochromatosis (HH). We aimed to evaluate these patients’ emotional responses during the pandemic through online survey. 44 ThSA (55%) and 54 HH (54%) answered the questionnaire. Both ThSA and HH reported high level of anxiety, worries and concern regarding SARS-Cov-2 pandemic that was the sum of several components: i. general fear for a new and potentially lethal disorder; ii. additional disease-related risk; iii. decreased standard care. About 40% of ThSA and more than half HH asked for more attention, information and protection regarding SARS-Cov-2 infection. These findings indicate: i. the need to guarantee adequate management of patients with rare diseases even in the case of an emergency as SARS-Cov-2 was and could be in the next future; ii. the need for exhaustive information to develop “healthy concern” in patients in order to contain both their anxiety and defensive attitude, thus preventing them from denial with ensuing greater exposure to risk.
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