Introduction

Dear patient, family member, patient representative or health care professional,

The European CF Patient Registry (ECFSPR) and CF Europe, the federation of CF patient organisations, have been working closely together in the past years to increase visibility of the Registry within the CF community. Several projects have been realised to bring the data from the European Registry closer to people with CF and their families. With this survey, we would like to collect your comments and thoughts on these initiatives. It will help us to get insight on how we can improve and how to shape the future projects.

Completing this survey will take only 15 minutes of your time and will give us very valuable input.

Thank you very much for your time and suggestions!

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