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
Vision
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.
Mission
Our mission is to promote and support patient-centered research, best standards of CF care and to represent and defend the interests of people with CF. We make every effort to inform members organisations and support the sharing of best practice while providing tailor-made support to our members.
Strategy
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
CFE Staff

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.

Elise Lammertyn
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.

Lidia Salvatori
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.

Claire Francis
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.
Board

Philip Watt
President (Ireland)
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.

Stefan Joris
Secretary (Belgium)
Together we can make ourselves heard, solidarity leads to a better care for all!

Audrey Chansard
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.

Milan Sedláček
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.

Marco Magrì
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.

Przemysław Marszałek
Board member (Poland)

Andreas Hager
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.

Renate Kos
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.

Nick Medhurst
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.
CFE Members
Azerbaijan
Public Association for Helping Cystic Fibrosis Patients (KİFYİB)
bosnia-herzegovina
Association of cystic fibrosis in Bosnia and Herzegovina, Udruženje za cističnu fibrozu u Bosni i Hercegovini
WebsiteCroatia
Drustvo za cisticnu fibrozu – Hrvatska Cystic fibrosis society – Croatia (CF Croatia)
WebsiteCroatia
Croatian Cystic Fibrosis Association (CF CRO) Hrvatska udruga oboljelih od cistične fibroze (Croatian)
WebsiteCyprus
Cyprus Cystic Fibrosis Association
kazachstan
Germany
DCFH
Macedonia
Zdruzenie za Cisticna Fibroza
Poland
Polskie Towarzystwo Walki z Mukowiscydozą
Portugal
ANFQ – Associação Nacional de Fibrose Quística (ANFQ – National Association for Cystic Fibrosis)
WebsiteCF Hilfe OÖ (Cystische Fibrose Hilfe Oberösterreich)
WebsiteCF Austria (Cystische Fibrose Hilfe Österreich)
WebsiteCF-Hilfe Wien
WebsiteCF Team Tirol und Vorarlberg
WebsiteCF-Clearly Future
WebsitePublic Association for Helping Cystic Fibrosis Patients (KİFYİB)
Muco vzw
WebsiteAssociation of cystic fibrosis in Bosnia and Herzegovina, Udruženje za cističnu fibrozu u Bosni i Hercegovini
WebsiteCystic Fibrosis Association Bulgaria
WebsiteDrustvo za cisticnu fibrozu – Hrvatska Cystic fibrosis society – Croatia (CF Croatia)
WebsiteCroatian Cystic Fibrosis Association (CF CRO) Hrvatska udruga oboljelih od cistične fibroze (Croatian)
WebsiteCyprus Cystic Fibrosis Association
Czech Cystic Fibrosis Association/Klub nemocnych cystickou fibrozou, o.s.)
WebsiteThe Danish Cystic Fibrosis Association
WebsiteEstonian Cystic Fibrosis Society
WebsiteSuomen CF-yhdistys ry. (The CF Association in Finland )
WebsiteVaincre la Mucoviscidose
WebsiteMukoviszidose e.V.
WebsiteDCFH
Hellenic CF Association
WebsiteAssociation for cystic fibrosis Greece
WebsiteCF Betegek Egyesülete – Association of CF Patients
WebsiteCystic Fibrosis Association of Ireland (CFAI)
WebsiteCystic Fibrosis Foundation of Israel
WebsiteLega Italiana Fibrosi Cistica (LIFC)
WebsiteAssociation for Persons with Cystic Fibrosis in Kosovo
WebsiteCystic Fibrosis Society of Latvia
WebsiteLithuanian Cystic Fibrosis Asociacion
WebsiteAssociation Luxembourgeoise de Lutte contre la Mucoviscidose ALLM
WebsiteZdruzenie za Cisticna Fibroza
National Association of Cystic Fibrosis in Moldova
WebsiteASSOCIATION FOR HELP AND SUPPORT FOR PEOPLE WITH CF MONTENEGRO-CG MONTENEGRO
WebsiteNederlandse Cystic Fibrosis Stichting
WebsiteNorwegian cystic fibrosis association
WebsitePolish Society Against Cystic Fibrosis
WebsitePolskie Towarzystwo Walki z Mukowiscydozą
Polish CF Foundation, Matio Foundation
WebsiteANFQ – Associação Nacional de Fibrose Quística (ANFQ – National Association for Cystic Fibrosis)
WebsiteAsociata de Fibroza Chistica Din Romania (Romanian Cystic Fibrosis Association)
WebsiteCF Russia
WebsiteInterregional NGO “Help to CF patients”
WebsiteAssociation for Help and Support to people with Cystic fibrosis of Serbia
WebsiteSlovak CF Association
WebsiteDruštvo za cistično fibrozo Slovenije
WebsiteFederación Española de Fibrosis Quística, CF Spain
WebsiteSwedish CF Association – Riksförbundet Cystisk Fibros
WebsiteCystic Fibrosis Switzerland (CFS)
WebsiteKistik Fibrozis Yardımlaşma ve Dayanışma Derneği
WebsiteCystic Fibrosis Trust
WebsiteUkrainian Association of care of patients with cystic fibrosis
WebsiteFonden Citronfjärilen
WebsiteHow we are funded
Funding for CF Europe comes from CFE Member organisations as well as public and private contributors. CFE accepts financial and non-monetary support with the mutual understanding that CFE maintains its independence and makes choices based exclusively on the needs of people with CF.
You can see how membership fees are calculated here:
Full membership fees are based on each organisation‘s annual operational budget (previous year) in € | |
Budget | Fee |
Less than 10.000 | 20 |
Between 10.000 and 49.000 | 50 |
Between 50.000 and 99.000 | 100 |
Between 100.000 and 499.999 | 200 |
Between 500.000 and 999.999 | 800 |
Between 1.000.000 and 1.499.999 | 1.500 |
Between 1.500.000 and 1.999.999 | 2.500 |
Between 2.000.000 and 2.499.999 | 3.500 |
Between 2.500.000 and 2.999.999 | 4.500 |
More than 3.000.000 | 5.000 |
CFE’s General Assembly meets annually and approves the organisation’s Annual and Financial Reports. CFE’s accounts are also audited yearly.
CFE’s Annual Report (2023) can be found here:
CFE’s financial reports can be found here:
CFE thanks CFE members, CFE corporate partners, the European Commission, foundations and individual contributors who help make CFE’s work possible.