News

Following the success of the ECFS Twinning Project, Call #3 is now open for CF centres across Europe to apply to become a mentor or...

For decades, developing a new CF treatment followed a familiar script. Patients in trials had progressive lung disease and few alternatives. Placebo-controlled studies were the...

On 22 June 2026, a milestone arrived quietly but with significant implications for people living with rare diseases across Europe: the publication of the first...

Lisbon in early June has a particular quality to it: warm evenings, long light, and a city that feels like it has been waiting for...

Towards an EU Action Plan on Rare Diseases In early 2026, two important documents were published that could shape the future of rare disease care...

In March 2025, the European Commission proposed new legislation called the Critical Medicines Act (CMA). Its main goals are straightforward: to strengthen the availability and...

A focus on the European Lung Health Group Over the past years, the European Lung Health Group (ELHG) has established its role as a key...

They are finally here: the HIT-CF team shares promising results of the CHOICES CFTR modulator trial and they suggest a good match between organoid testing and...

Empowering Our Community Through the European Respiratory Patient Academy In November, five advocates from CF Europe member organisations joined 42 participants from 23 countries at...

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We were thrilled to share some very positive news last Friday (28th February) and we know that many in the CF community were excited to...

The European Cystic Fibrosis Society (ECFS) and Cystic Fibrosis Europe (CFE) have jointly submitted a request to the European Medicines Agency (EMA) to expand the...

As advocates for the Cystic Fibrosis (CF) community, CF Europe is committed to facilitating the approval and equitable access to life-enhancing and life-saving therapies for...

We are happy to announce that the enrolment of 40 participants within CHOICES has been successfully completed. CHOICES is the clinical trial of the HIT-CF...

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Cystic Fibrosis Europe (CF Europe) is deeply committed to promoting Diversity, Equity and Inclusion (DEI) within its organization and across the broader cystic fibrosis (CF)...

Press Release 3rd December 2024 CF Europe, representing cystic fibrosis (CF) patient associations across Europe, urges the Committee for Medicinal Products for Human Use (CHMP)...

As part of the Twinning Expansion Project, we are holding the South Eastern European CF Conference in Cluj-Napoca, Romania from Thursday 24th – Saturday 26th...

The European Cystic Fibrosis Young Investigator Meeting (EYIM) is a scientific meeting organised by 7 national CF patient organisations, under the umbrella of CF Europe...

In this month’s newsletter, we’re sharing exciting progress on the CHOICES initiative, a crucial reconsent request for HIT-CF organoid biobanking, and groundbreaking news about the...

Today, a Call to Action was announced urging all those involved in the new EU Joint Clinical Assessment (JCA) to recognize and use all types...

With a second participant enrolled and a third screened and ready to go, CHOICES is off to a great start. Read all about it in...

New CF centres twinned to improve care across Europe   We are excited to announce the expansion of ECFS/CFE Twinning Project, which aims to build...

We at CF Europe remain committed to advocating for the right to health and well-being of individuals living with Cystic Fibrosis (CF) across borders. We...

In November, Vertex submitted an application to the European Medicines Agency EMA to extend the use of Kaftrio to people with specific mutations beyond F508del,...

Amid conflict and chaos, people living with very vulnerable health conditions, including those with cystic fibrosis (CF) in Gaza face additional challenges and are in...

Cystic Fibrosis Europe (CF Europe) is committed to advancing the interests and well-being of people with cystic fibrosis (CF) across Europe. As advocates for the CF community, we recognize the importance of collective efforts in shaping the future of pharmaceutical legislation within the European Union (EU). In line with the...

Since the introduction of CFTR modulators over ten years ago, treatment and care of people living with cystic fibrosis (CF) has significantly changed. These treatments...

CFE is pleased to let you know that European Commission (EC) has today (23 November) granted approval for the label expansion of Kaftrio for the treatment of children with cystic fibrosis (CF) aged 2 to 5 years old who have at least one F508del mutation in the CFTR gene. This is good news for European countries...

In September, after some of our member organisations reported Creon shortages in certain countries, CF Europe launched a short survey to get a broad overview of the problem at the European level. More than 522 people with cystic fibrosis and their relatives from 30 countries completed the survey.   Thank you...

We are deeply saddened by the recent escalation of violence in Israel and Gaza, and we join all those calling for a ceasefire to allow humanitarian assistance into Gaza.   We are concerned for the lives of people with cystic fibrosis in the region, mostly children, doubly impacted by war. In addition to fear, loss and trauma, war impacts the possibility to access...

CFE is very concerned about attacks on or near hospitals and health centres and areas of high population in both Gaza and Israel and the concomitant threat to all people with very vulnerable health conditions, including those with cystic fibrosis (CF) living in the region. We understand the very high...

There are important updates on HIT-CF after a period of uncertainty for the project which lead us to pause our communications. Read more about how the CHOICES trial will resume in the dedicated newsletter and spread the good news! HIT-CF-Newsletter-August-2023_final

The European Medicines Agency (EMA), the regulator for medicines in the European Union, has requested a change to the information included with Kaftrio®. This information is known as ‘the label’ and is the information leaflet that people with CF/parents will be familiar with and will find accompanying Kaftrio® and which...