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 mentee. Since its launch, the Twinning Project has supported CF centres in building partnerships, sharing expertise and strengthening care across Europe. Due to the success of the project, the ECFS […]
oxana.igonchenkova@cf-europe.eu
Revision of the EMA guideline for CF: clinical development enters a new era
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 standard. Improvement in lung function was how success was measured. That script no longer fits, and the European Medicines Agency has finally rewritten it. The revised EMA guideline on the […]
The first Joint Clinical Assessment under the EU HTA Regulation: what it means for people with CF
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 Joint Clinical Assessment (JCA) under the EU HTA Regulation. The webinar marking this moment brought together patient organisations, medical societies, industry and health technology assessment (HTA) bodies, organised by the […]
Believing. Building. Becoming: CF Europe’s Annual General Meeting in Lisbon 2026
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 you. It turned out to be the perfect backdrop for two days that were, by any measure, full. CF Europe members and partners came together from across the continent for […]
Towards an EU Action Plan on Rare Diseases
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 across Europe. The first is the Casares report, adopted by the European Parliament’s Health Committee, which sets out a political vision for a European Action Plan on Rare Diseases. The […]
Critical Medicines Act: Protecting Access to Essential CF Treatments in Europe
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 security of supply of critical medicines in the EU, and to ensure fair access to vital medicines through coordinated action at EU and national levels. For people with CF, medicine […]
European Lung Health Group: Advancing Respiratory Policy and Patient Advocacy
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 platform for coordination, advocacy, and political engagement on lung health at the EU level. Bringing together patient organisations, scientific societies, and policy stakeholders, ELHG shapes a unified European agenda focused […]
HIT-CF news: Promising results of the CHOICES CFTR modulator trial !
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 clinical outcomes! This text is a community adaption of the original press release of October 20, 2025. In October, the HIT-CF team has presented the final results of its major […]
European Respiratory Patient Academy in Prague: Empowering Our Community Through the European Respiratory Patient Academy
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 the European Respiratory Patient Academy—four intensive days focused on turning lived experience into policy change. The Polish Society for the Fight Against Cystic Fibrosis, ASSOCIATION MUCOVISCIDOSIS Bulgaria, Slovak Cystic Fibrosis […]
Call for Abstracts – 19th EYIM 2026, Paris
[…]