Rapporto ISS COVID-19 n. 39/2020 English version - Census of needs (March 23-April 5, 2020) of people with rare diseases in the current SARS-CoV-2 emergency scenario. Version of May 30, 2020
Rapporti ISS COVID-19 in English
Istituto Superiore di Sanità
Census of needs (March 23-April 5, 2020) of people with rare diseases in the current SARS-CoV-2 emergency scenario. Version of May 30, 2020.
ISS COVID-19 Rare Diseases Working Group
2020, 13 p. Rapporto ISS COVID-19 n. 39/2020 – English version
This report illustrates the results of the survey, promoted by the National Centre for Rare Diseases of the Istituto di Sanità and by UNIAMO, the Italian Federation of Rare Diseases Onlus. The survey was launched with the aim of collecting the needs of people with rare diseases and their caregivers and highlighting their most pressing requirements in the initial period of the COVID-19 health emergency. The online questionnaire received 1174 responses in 2 weeks (March 23 - April 5, 2020). The results provide a snapshot of the difficulties and inconveniences of this fragile population group at a time when the first support measures were being developed at national as well as regional levels. Problems have been highlighted regarding both health care and social health support during the pandemic; a significant need for information was also highlighted concerning the pandemic’s impact on the health condition of the person as well as on social health services.
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