Information

March 31st, 2020 – Covid-19 and CF – Update 

In order to evaluate quickly how Covid-19 affects people with CF, the whole European CF community is mobilised to collect data in a reliable and systematic fashion. CF Europe is having regular (virtual) meetings with the European Cystic Fibrosis Society (ECFS), the ECFS patient registry (ECFSPR), the ECFS clinical trial network (CTN) and patient representatives from all over Europe.

> Read more here: 2020-03-31 Communication Covid-19

 

March 23rd, 2020 – Covid-19 and CF

The facts – What do we know?

At the moment there is no official data available about people with CF being tested positive for Covid-19. CF health care professionals are now overwhelmed with extra work in many countries and cannot be expected to provide exhaustive information on the short term. Anecdotal information from people with CF tested positive for the virus has been shared through social media, but of course this is not scientifically sound information.

Therefore, there is still a lack of consensus regarding recommendations about daily follow-up of people with CF. Each patient is unique and we strongly invite you to contact your doctor would you have any questions regarding your treatment or symptoms.

Our actions – What are we undertaking?

  • CF Europe pro-actively interacts with ECFS and the ECFS-CTN to gather and communicate reliable information about the quickly evolving situation. We work jointly in the effort of collecting data about how and where the virus is hitting the CF community. Our objective is to keep the CF community updated as timely as possible.
  • CF Europe is also following up on the work of the global harmonization group gathering the teams of the CF registry of the EU, US and Canada. Together, they will collaborate to collect longer term data on Covid-19 global impact on the CF community.

What can you do?

To prevent the spread of the virus and in support of healthcare professionals, we encourage you to follow the guidelines given by the World Health Organization and your national authorities.

In these times of crisis, it is particularly important to consult trusted websites for up-to-date information. Please find below links to official information sources that are updated regularly. We also advise that you refer to information published by your own national health authorities / ministries.

The staff of CF Europe continues to work from home and is dedicated to the following up of the situation to provide you with timely and reliable information.

Would you have additional questions or remarks to share, please do not hesitate to contact us.

 

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CFE informs its members on the progress of activities in CF research, care and lobbying, as well as general information about evolutions in the CF community. In addition, CFE enables sharing of best practice by organizing workshops and learning platforms.


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