Who we are
Cystic Fibrosis Europe (CFE) is the federation of national and regional CF Patient Organisations in Europe with members in over 39 countries. Founded at the European CF Conference in Belfast in 2003, CFE represents people with CF and their families in Europe. CFE works in close collaboration with other international organisations and is an active partner in several European projects.
Vision, mission and strategy
CF Europe is striving for people with cystic fibrosis (CF) to live a longer and better life. Our vision is a future where people with CF have access to optimal care. Ultimately, a future where a cure is found and accessed by all people with CF.
CF Europe aims to be a powerful and representative voice of people with CF in Europe. We champion the best research in line with what people with CF want, fight for better care across Europe and provide support and best practice for CFE member organisations.For more information, please refer to the CFE strategy.
Team & board
Hilde De Keyser
Chief Executive Officer (CEO)
It is inspiring to work together with so many committed people and great minds towards a world where people with CF are at the centre of their own care and CF is no longer an incurable disease.
Head of Research
Already during my PhD work, I felt so warmly welcomed by the scientific CF community. Now to get to work for and with people with CF and their families, and the organisations that represent them, is really fulfilling and heartwarming. With great pleasure I am at your service.
Project lead on the Real World Data Programme VERA
I am leading the Real World Data programme for CF Europe and feel passionately that people with CF should be at the centre of what data is collected and have ownership of their data so that they can better partner with their care team.
Effective partnerships are so often key to success. The CF community’s solidarity, skills and commitment to working together are truly inspiring. I’m honored to support CFE to engage companies and other external stakeholders in this work.
Policy and Communications Manager
Working at CFE, I joined a remarkable community, determined to advocate for the right of people with CF to flourish and access the best available care and treatment, transforming lives, one person at a time. A community that comes together strongly in times of crisis, as the solidarity for people affected by the war in Ukraine is showing.
With the strong community we have, we’re able to make a difference. That’s what we do: we move mountains.
Together we can make ourselves heard, solidarity leads to a better care for all!
Board member (Italy)
I believe that we are in an important and positive moment for the treatment of Cystic Fibrosis, despite COVID-19 and the Ukraine war slowing down many activities. Today, more than ever, cooperation, skill diversification, and knowledge sharing are essential to achieve the same level of healthcare for all CF patients across Europe. Pushing scientific research forward to identify new drugs, improving digital health and personalized therapies, can transform the quality of life of all people with CF. I’m extremely proud and motivated to be able to contribute to the achievement of these common goals.
Board member (UK)
I believe that, through research, CF can become entirely treatable in my lifetime and during more than 7 years working for the UK’s Cystic Fibrosis Trust (2013-2020), I was privileged to see a major step forward in fighting the disease when new highly effective treatments were developed. I also felt the loss and saw the damage that CF does so I continue my work with CF Europe to represent and defend the interests of people with CF.
Board member (France)
"Because the people who are crazy enough to think they can change the world are the ones who do" – Steve Jobs
Board member (UK)
Only together can we help every person with cystic fibrosis live a long and full life.
Board member (Ireland)
I see being a board member as a two way process - a chance to help shape policy and research related to CF at a European level and to hear and learn from all the fantastic work happening in other CF associations - we are always stronger together. CFE’s support for people with CF affected by the devastating invasion of Ukraine and war is a good recent example of how we can work together to effect change. Much done-more to do.
Board member (Poland)