CF Europe

CF Europe is urging the European Medicines Agency to expand the label for Kaftrio to benefit more individuals with cystic fibrosis (CF). At a recent Scientific Advisory Meeting, Audrey Chansard represented the voice of people living with CF, supported by a letter from CF Europe highlighting the urgency of this issue. Currently, too many CF patients are excluded due to approval criteria based on genetic variants. Evidence, including a French study led by Professor Pierre-Régis Burgel, shows over 50% of patients with non-indicated variants benefit from Kaftrio. CF Europe advocates for a patient-centered approach, evaluating functional responses at the CFTR protein level. Behind these statistics are real people, like Francesca Farma’s son, waiting for life-changing treatment: “Knowing an approved drug could transform my son’s life but seeing it under review for more than a year is unbearable”. CF Europe calls on the EMA and its Committee for Medicinal Products for Human Use (CHMP) to expedite broader access to Kaftrio. Every day of delay greatly impacts lives. https://lnkd.in/eki9ts4G

We fully endorse the European Respiratory Society call for EU Member States to support the European Commission proposal for smoke- and aerosol-free environments, ahead of the Council vote today, December 3rd. In this statement, Dimitris Kontopidis, former CF Europe's board member, now Chair of the European Lung Foundation, says: “Smoke-free environments are important for protecting the health of everyone, especially those of us living with lung conditions who are more vulnerable to the harms of smoking and vaping. Supporting these recommendations would not only reduce immediate health risks but also help ensure that future generations are not exposed to these dangers. This is an important step in creating a healthier society for all and easing the strain on our healthcare systems”.

Our sincere wishes of a successful conference go to our Greek member organisation Κυστική Ίνωση Cystic Fibrosis.gr On Sunday 1st of December you'll be able to attend the Cystic Fibrosis Hybrid Conference 2024: "Discovering the Path to Boundless Breathing" You can register here to participate via Zoom: https://lnkd.in/eH-bqmpV

for the third year in a row, CF Europe is attending Data Saves Lives - this year, we are happy to celebrate together the 5th anniversary of this brilliant initiative launched by the European Patients' Forum' #EPF5 #healthdata #EuropeanHealthDataSpace #EHDS #DigitalHealth

🌟 European CF Awareness Week starts today! 🌟 This week, we invite all our members to showcase how they are marking this important occasion. Share your stories, events, and initiatives by tagging us in your posts and let’s spread awareness together! This year, we are incredibly proud to see the flourishing of the Twinning Expansion Project and many other initiatives of solidarity within the CF community. However, we know there’s still a lot of work to do to reach our strategic aim of leaving no one behind, especially in the challenging times we are living. Let’s make this week a powerful reminder of what we can achieve with our collective strength and commitment, continuing to pay attention and making a difference! #CFAwarenessWeek #LeaveNoOneBehind

Last Friday we had a very interesting meeting with some of the CF patient organisations, involved in the Twinning Expansion Program during the SEE CF Conference in Cluj. Thank you all for sharing your stories, your needs and your dreams for the CF community.

SEEC 2024 now came to an end and we are very grateful to all the speakers and participants for their contribution. A special thanks to the organisers from Impreuna pentru Patrick and the Asociatia De Fibroza Chistica who did such an impressive job! We think the conference was a success and we hope you did too! Do let us know in the comments or get in touch by emailing the CFE team with any questions.

another day full of discussions and exchanges is about to start. We hope you enjoyed the conference so far, don't miss out on the final day with sessions on access to modulators, physiotherapy, nutrition and more! 💡 https://lnkd.in/ehqhQb-9

SEEC 2024 continues today with a programme full of interesting talks on important topics: from newborn screening to Standards of Care and the psychosocial aspects of CF. And in the afternoon a round table meeting between participants in the Twinning Expansion Project. You can follow the broadcast starting soon here: https://lnkd.in/ehqhQb-9

Watch live day one of the South Eastern European CF Conference 2024 https://lnkd.in/e7QAnAJH