In May, we unite as a community to shine a spotlight on #CysticFibrosis during #CFAwarenessMonth. This year, we're embracing the theme of Resilience: finding flexibility amidst life's challenges. Let's celebrate the resilience of people with CF and honor their journey.

No better time than #CFAwarenessMonth to announce the expansion of ECFS/CFE Twinning Project! A three-year (2024-2026) collaboration aimed to improve access to high quality, multidisciplinary #CysticFibrosis care and optimal treatment. More informatin on: ecfs.eu/ecfs-standards…

Our database includes data from more than 54,000 people with CF, from 40 participating countries, and longitudinal data from 2008 to 2021. It is a unique resource reflecting the reality of CF across Europe. Interactive map available at ecfs.eu/ecfspr

The 2022 annual report is coming soon! 😎Longitudinal data analyses on critical variables such as lung function, microbiology, and drug utilisation will be available, along with comprehensive details on the health status of people with #cysticfibrosis in Europe. Stay tuned.

Come meet the ECSPR team at the ECFSPR booth in Glasgow. See you soon! European Cystic Fibrosis Society #Glasgow #CysticFibrosis

The Highlights report has just been published! ecfs.eu/projects/ecfs-… It's the perfect way to kick off the European Cystic Fibrosis Society in Glasgow. #cysticfibrosis #europe

President Jane Davies has announced the publication of the Highlights Report and the new 2022 ECFS Patient Report. With the conference now concluded, there’s plenty of time to read them thoroughly!😎 See you next year in #Milano!

The number of countries and people with CF in the ECFSPR has risen continuously over the years! 😎 We invite all CF centres to participate in the registry and we are confident that over the next few years several more centres will join us. #cysticfibrosis

The 2022 report was made possible by the efforts of many. We will continue to gather information for people with CF. Visit our website at ecfs.eu/ecfspr for the latest updates. #patientregistry #CysticFibrosis

The annual report for 2022 introduces a new feature: longitudinal graphs.📈 For instance, the graph below clearly illustrates how the prevalence of chronic Pseudomonas aeruginosa varies in people with #cysticfibrosis, categorized by age group and years of follow-up.

Do not miss the opportunity to learn how the ECFSPR works! Register for our free webinar here: us02web.zoom.us/webinar/regist… See you tomorrow!

Explore our 93-page slide deck filled with graphs, maps, and valuable insights, perfect for your presentations, meetings, and documents. Download the complete slide deck from the 2022 Annual Report now! ecfs.eu/projects/ecfs-…

In case you missed the webinar on the organization and goals of ECFSPR, you can catch up by visiting the Education Platform ecfs.eu/education. Listen to Anna Zolin (IT), Alice Fox (UK) and Domenique Zomer-van-Ommen (NL), moderated by Chris Smith (UK). European Cystic Fibrosis Society

An overview of countries where elexacaftor/tezacaftor/ivacaftor therapy is licensed and reimbursed in 2022. For more maps on other CFTR modulators, donwload and read the ECFPR 2022 annual report! ecfs.eu/projects/ecfs-…

A study on ECFSPR data showing early favorable trends in clinical outcomes, including growth parameters and hospitalizations, in children with CF who initiated LUM/IVA treatment between the ages of 2 and 5 years. Read more at: sciencedirect.com/science/articl… Journal of CF Vertex Pharmaceuticals

🌊☀️🌴 Happy Summer Holidays! 🌴☀️🌊 Wishing everyone a season full of sunshine, relaxation, and unforgettable adventures. We'll continue gathering data from European countries and preparing for our next big goals. Enjoy every moment this summer! #SummerVibes #HolidaySeason

The European Cystic Fibrosis Society Patient Registry has been added to the HMA-EMA Catalogues of real-world data sources and studies. EU Medicines Agency European Cystic Fibrosis Society catalogues.ema.europa.eu/node/3917/admi…

Today is Worldwide Cystic Fibrosis Day! 🌍💙 Registry data is vital in improving treatments, understanding trends, and shaping the future of CF care. Together, we can advance research and offer hope to all living with CF. #CysticFibrosis #CysticFibrosisAwareness #WorldCFDay

A significant improvement in BMI in 2022 from the age of 6 years is a reflection of the efficacy of CFTR modulator therapy in Europe. Look at the median z-score for BMI reported in the annual report for 2022📈 #cysticfibrosis #nutrition