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 is a non profit organisation representing 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 CF Europe 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.
Policy and Communications Manager
I am a social researcher currently managing policy and communications at CFE. I do not have direct experience living with CF but my ambition is to contribute to research-informed policy and advocacy work that tackles inequity in access and contributes to a better understanding of the social and environmental determinants of health for people with CF.
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.
Cystic Fibrosis Europe represents its member organisations spread over 39 countries in Europe, where the number of people with CF is estimated as almost 60,000. Together, we can work to ensure the voice of people with CF and their families continues to shape healthcare policy, care and research. We are in a period of increased hope for people with CF, particularly because of new and innovative drug treatments. However, we must ensure that this hope is shared more equally and more rapidly than at present and ‘no one with CF is left behind’. This is an enormous challenge, but if we work strategically, and in partnership, we can make real progress in helping to ensure that CF continues to be a more manageable disease and with greater access across Europe to optimum standards of care.
Together we can make ourselves heard, solidarity leads to a better care for all!
Board member (France)
Cystic Fibrosis patients have seen dramatic changes since I was born in 1989 and the gene discovery. I am confident that we will see CF as a treatable disease for all patients in my lifetime. Let's not leave anyone behind, we have to work together for real equity.
Board member (Czech Republic)
I would like to help to ensure that current advances in CF treatment make a real difference in the lives of CF patients and their families. That new medicines bring more peace and laughter into our lives and bring less time in hospitals and more time for everyday experiences. And that's across the country and regardless of the specific complications of individual patients.
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 (Poland)
Board member (Sweden)
I want to help foster a community that welcomes all those living with cystic fibrosis in their life, within their family, their work, their community. When we regard each other as equals it helps us to achieve things together beyond formal institutions. When we aim to help others, to enhance understanding of us as patients, the depth of our stories can be better grasped and listened to. Healthcare and research needs to be informed by a true story - and every personal journey with cystic fibrosis is a true story. So that together we can promote health and wellbeing, while preserving mutual respect, honesty, collaboration, equality and ethics.
Board member (Netherlands)
I have been extremely motivated by the people with CF that I’ve met, but also by the nurses, caregivers, researchers, and the rest of the community that truly wishes for people with CF to live a longer and better life. I want to put my scientific knowledge to good use. With CF Europe we can make an impact for people with CF on a European level. So that people can get access to the potent drugs we have these days. So that CF can stand for Cure Found.
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.