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 the 2026 Annual General Meeting, and what unfolded over those two days was more than a programme of sessions. It was a community choosing to invest in itself, asking hard questions about the future of CF care, welcoming new voices, and recognising the people who have carried this work for decades.

Here is what happened.

News from the AGM

As an organisation, CF Europe took several important steps forward during this year’s AGM. Members voted to welcome two new Member Organisations to our community, from Albania and from Lithuania, and we look forward to growing our shared mission together with them. We asked them to share what joining CF Europe means to them:

 “For me, becoming a member of CF Europe was one of the main goals and aspirations from the very moment we established Salty Wave.

I strongly believe that international collaboration does more than open new horizons – it builds bridges between different experiences, perspectives, and approaches. While our shared goals are remarkably similar across countries – raising awareness of cystic fibrosis, strengthening communities, supporting patients and families, and advocating for their needs – it is through collaboration that we learn from one another and grow stronger together.

The CF Europe community creates opportunities to exchange best practices, share knowledge, and learn from experiences across Europe. This is especially valuable for smaller countries such as Lithuania, where the CF population consists of only around 100 people, perhaps even fewer. Access to international expertise, resources, and networks can have a meaningful impact on the support we are able to provide to our community.

As a newly established organization, we are only at the beginning of our journey, but we are excited to learn, collaborate, and contribute to the wider European CF community.

Thank you once again for your warm welcome and support.” – Urtė Gylienė, Lithuania

“Albania has never before had an association dedicated to representing and advocating for people living with Cystic Fibrosis.

One year ago, following a meeting with CFE, we came together to establish our association. Today, our organization is fully operational and committed to supporting the Cystic Fibrosis community in Albania.

We are very proud to have become a member of the CFEU Board, which enables us to represent our country at the European level. Your support is invaluable to us, and we sincerely appreciate all the guidance, information, and assistance you continue to provide. Thank you!”  – President of the Albanian Association, Monika Qëndro

The AGM also confirmed several Board appointments. Stefan Joris was elected to the Board seat representing Western Europe CF Patient Organisations, and Valerie Storms starts a new term  as an Independent Board Member. Members also approved the replacement of Milan Sedlacek by Oana Voivod on the Board. We thank Milan for his contribution to CF Europe.

“I am honoured to extend my presence within the CFE Board as an independent member. My journey started with a passion to make a positive impact for people living with CF — first through science, and later through patient advocacy. Over the years, I have learned that innovation only changes lives when it reaches the patients who need it most. I look forward to working with the incredible CFE community to advance health equity, strengthen the patient voice, and improve access to high-quality care and innovation for everyone living with CF across Europe.” – Valerie Storms

 

“Joining the CF Europe Board is both a great honour and a responsibility that I deeply value.

As the parent of a child with cystic fibrosis and the leader of a CF patient organisation in Romania, my  journey into advocacy began with a desire to help my own child. Over time, that journey expanded into a commitment to support the wider CF community and to work towards better care, understanding, and opportunities for all people living with cystic fibrosis.

One of the greatest gifts CF Europe has given me is the opportunity to meet and learn from people across Europe. Through conferences, projects, and collaborations, I have had the privilege of connecting with parents, patients, advocates, and healthcare professionals from both highly developed and less-resourced countries. I have met experienced experts as well as young professionals at the beginning of their careers, and each of these encounters has taught me something valuable.

These experiences have helped me better understand the diversity of the CF community across Europe, but also the common hopes, challenges, and aspirations that unite us. I am grateful for these opportunities, as they have broadened my perspective and strengthened my belief that we can achieve more when we work together.

As a Board member, I hope to bring the voice and experiences of families and patients from my region while continuing to learn from others. Above all, I want to use what I have learned to support as many people as possible-parents, patients, and families-regardless of where they live.

If I can help make a positive difference, even in a small way, I will do so with all my heart.”– Oana Voivod

As always, the Patient Organisations Research Group (PORG) met during the conference. Uniting members from Italy, France, Poland, UK, the Netherlands, Belgium, Germany, Ireland, Switzerland and Luxemburg, the PORG helps shape CF Europe’s research activities.

In Lisbon, PORG members brainstormed ideas for the next patient-led symposium at the ECFS Basic Science Conference in 2027, with topics including women’s health (for instance menopause, maternal and foetal health), the lung-gut axis and new biomarkers to monitor disease activity. These options will now be discussed with ECFS and the Chairs of the Basic Science Conference. The group also discussed the ongoing revision of the European Medicines Agency (EMA) guideline on the clinical development of medicinal products for the treatment of CF. These guidelines predate the widespread adoption of highly effective CFTR-modulators, meaning that an update is appropriate and necessary. The revised guideline is now published for public consultation and feedback until August 31st. The PORG discussed how CF Europe can best give feedback, and decided CFE and ECFS will provide common input on the draft.

We are also happy to announce that Renate Kos, Coordinator of the Dutch Trial Consortium and CF Europe’s Vice-President, will take over from Jutta Bend from the German patient organisation Mukoviszidose e.V. as CFE’s representative in the Executive Committee of ECFS’s Clinical Trial Network. A heartfelt thank you goes to Jutta for her six years of dedicated service in representing the patient voice.

Finally, the PORG is revising its Terms of Reference with the aim of becoming even more inclusive, ensuring that more patient voices across Europe are heard and that knowledge is shared more widely with organisations wishing to strengthen their research activities.

Beyond these governance decisions, much of the energy of the conference came from our workshops, where members rolled up their sleeves on some of the most pressing topics facing our community today.

Workshop: Future CF Care Model

On the first afternoon, Hilde de Keyser and Marta Kerstan opened this workshop with a welcome and introduction, followed by a keynote on “Project Horizon” from Alexandra Kramarz (Mukoviszidose e.V.) and Thierry Nouvel (Vaincre la Mucoviscidose). Participants then worked in small groups exploring personas and key questions, before coming back together to share their findings and discuss next steps. The group agreed to continue the conversation through an online follow-up meeting after the summer break, to develop a shared narrative on the future of CF care.

Workshop: Twinning and Positive Deviance

Running alongside this session was our workshop on Twinning and Positive Deviance (PD), which looked at the future of the Twinning project and the role PD can play within the CF community. After introductions, participants reflected on what people with CF and patient organisations are currently struggling with, and what is already working well. Hilde and Claire gave an update on Twinning, while Marcus and Micky shared progress on Positive Deviance work in Romania and on PD as a tool for people with CF and patient organisations. The afternoon included hands-on practice in small groups and a discussion on what it takes to bring PD into local communities, closing with a group reflection.

Workshop: Communication & Campaigning

The following day, after the AGM, members reconvened for a workshop on Communication & Campaigning, opened by Thierry Nouvel, President of CF Europe. Margaux Roque (Vaincre la Mucoviscidose) presented the results of a survey on how CFE members approach communication, followed by examples of members’ own communication campaigns. After a coffee break, participants split into sub-groups led by Clare Corbet (CF Trust, United Kingdom), Micklos Andras (Together with Patrik, Romania) and Pierre Gérard (Vaincre la Mucoviscidose, France) to discuss what message to communicate and how to communicate it. The workshop closed with a restitution of the group work and a Q&A session.

With so much packed into these two days, we’d love to know what stood out to you and what we could do better next time. If you have a moment, please share your thoughts through this short form.

A heartfelt thank you

None of this would have been possible without the people who gave their time, knowledge and energy to make the Lisbon conference what it was. A warm and sincere thank you to our speakers, facilitators and contributors: Thierry Nouvel, Hilde de Keyser, Marta Kerstan, Margaux Roque, Clare Corbet, Miklos Andras, Pierre Gérard, Marcus Thygeson, Andreas Hager, Flaminia Macchia, Alexandra Kramarz, Christina Eberle, Claire Francis, Elise Lammertyn, Oxana Igonchenkova and Oana Voivod. Each of them helped create sessions that were not just informative but genuinely energising, and we are grateful for their generosity and commitment to our shared mission. And of course, an equally big thank you to every participant who travelled to Lisbon and brought their perspectives, questions and enthusiasm to every room. Events like this only work because of the community behind them, and you reminded us exactly why this work matters.

Before we close, there is one more moment from Lisbon we want to share with you.

Patient Advocate of the Year: Stephan Kruip

One of the most moving moments of the conference was presenting Stephan Kruip with this year’s Patient Advocate of the Year Award. Stephan has lived with cystic fibrosis for more than 60 years, and somehow has managed to fit several lifetimes into one: a career as a physicist, marathon running, advising on ethics, and decades of advocacy for people with CF that never seems to slow down. Since 1988, he has been a steady and determined presence in our community, co-founding the “Living with CF” working group and leading the German CF Association for over 35 years, including as Chair of the Board since 2014. His commitment has never stopped at national borders either: he has fought for fair access to CFTR modulators, helped coordinate medication support for CF patients in Ukraine, and built lasting bridges with the Georgian CF community through the CF Europe Twinning Project. Stephan’s story reflects the progress our whole community has fought for, and his quiet, persistent dedication has touched countless lives along the way. Congratulations, Stephan, and thank you for everything you continue to give to people living with CF.

Thank you all for your continued dedication to the CF community. We look forward to building on the momentum from Lisbon together.