In 2019, EU-IPFF carried out a survey of patients to understand how patients experience the process of diagnosis in 12 European countries. The survey was undertaken jointly with Action for Pulmonary Fibrosis (UK) and supported by the pharmaceutical company Galapagos and has now been released.
The results confirmed our worst expectations:
- 41% of pulmonary fibrosis patients had to wait more than a year to be diagnosed
- 37% of patients were misdiagnosed at least once
- The journey to diagnosis is an anxious and worrying time for patients.
The results are now public in various versions - please find the full article, report infographics and videos.