Background: During the outbreak of the COVID-19 pandemic in the Spring of 2020, lockdowns were imposed in an attempt to stop its spreading. This situation was particularly concerning for people living with a chronic condition, such as people with cystic fibrosis (PWCF), who are vulnerable to respiratory infection and need regular clinical follow-ups. Methods: In April 2020, a Europe-wide survey investigated the impact of the pandemic-related restrictions on the day-to-day life, care and wellbeing of people living with a rare disease. Responses of the CF community are presented with a focus on the differential impact between Eastern European countries (EEC) and Western European countries (WEC). Results: Access to hospitals and professional care was greatly reduced, and more than 60% of respondents felt isolated, depressed or helpless. This fed the perception that this crisis was detrimental to health and 92% of respondents to consider COVID-19 as high threat to PWCF. Although mortality rate was limited in EEC during this first wave, shortages and cancellations were reported twice as often compared to WEC, and EEC respondents were more fearful to visit the hospital. Incidentally, the survey revealed a large "employment gap" between EEC and WEC, generating financial insecurity in EEC and higher apprehension. Conclusions: This peril had a major impact on psychosocial wellbeing and highlighted the fact that PWCF relied on the community support. On the other hand, it triggered the integration of telemedicine into routine CF care. European umbrella organisations must aim to coordinate efforts and harmonise access to care, treatments and support throughout Europe.

The authors have declared no competing interest.

EB received funding from ECFS and CF Europe through a joint post-doctoral research fellowship.

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The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

This study was conducted in collaboration with EURORDIS - Rare Diseases Europe, which reviewed and approved the survey protocol. All responses were collected anonymously, and informed consent was obtained from all participants prior to participation. No personally identifiable information was collected or stored. As the study involved minimal risk and did not include identifiable human data, formal ethical approval from an IRB was not required.

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The data underlying this study were collected anonymously via an online survey and are not publicly available due to privacy considerations and the terms of participant consent. Data may be made available by the authors upon reasonable request and with permission from EURORDIS - Rare Diseases Europe.