Mailová správa od Hilde De Keyser

Dear CFE members,
Dear colleagues,
Dear friends,
Over the last days and weeks, Covid-19 (Coronavirus) has changed our reality a lot.
We receive many questions from you, the European CF community, and we do understand and share your concerns.
The situation surrounding COVID-19 evolves very fast in Europe and across the world, and people with CF may be concerned about their health.
Therefore we decided we want to update you regularly:
  • on what we know
  • on what we are undertaking to follow up on the situation
What do we know?
At the moment we don’t have official data about people with CF that were tested positive for the Covid-19 virus. CF health care professionals in many countries are now overwhelmed with extra work, so we don’t and can’t expect information from them on the short term. We do have anecdotal information from people with CF that were tested positive for the virus, but of course that isn’t scientifically sound information. This makes it difficult to give general information about possible changes in daily follow-up of your CF. If you have questions, please do contact your doctor.
What are we undertaking?
 CFE pro-actively contacted ECFS, when we posted the first information on our website:
  • Last week again, we contacted the ECFS-CTN to investigate how we can work together, join our efforts to collect information on how and where the virus hits the CF community.
    We will keep you updated on that joint effort.
  • Last Friday we also joined a meeting of the global harmonization group. CF registries from the EU, US and Canada decided they want to collaborate to collect information on Covid-19 in the CF community globally. These data will be gathered on the longer term.
Of course, everybody’s safety is paramount for us. 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.
The CFE-staff continues to work, but is working from home now. Know that we are reachable and that we are following up on the situation for you.
If you want up to date information about Covid-19 it is important to look for it on trusted websites.
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.
If you would have additional questions or remarks that you want to share with us, please do not hesitate to contact us.
Best wishes,