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

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 the CFE 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.

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

Jacquelien Noordhoek

President (Netherlands)

With the strong community we have, we’re able to make a difference. That’s what we do: we move mountains.

Stefan Joris

Secretary (Belgium)

Together we can make ourselves heard, solidarity leads to a better care for all!

Marco Magrì

Board member (Italy)

I believe that we are in an important and positive moment for the treatment of Cystic Fibrosis even if the COVID-19 emergency and the war in Ukraine have slowed down many activities. Today, more than ever, cooperation, skill diversification, and the sharing of perspectives are essential to achieve the same level of healthcare for CF patients across Europe. Pushing Scientific Research forward to identify new drugs that can treat all those who today do not have any drug available, along with improved digital health and personalized therapies, has a great potential to improve the quality of life of all patients. I’m extremely proud and motivated to be able to contribute to the achievement of these common goals.

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.

Audrey Chansard

Board member (France)

"Because the people who are crazy enough to think they can change the world are the ones who do" – Steve Jobs

Michaela Regan

Board member (UK)

Only together can we help every person with cystic fibrosis live a long and full life.

Philip Watt

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.

Przemysław Marszałek

Board member (Poland)

CFE Members

Austria

CF Hilfe OÖ (Cystische Fibrose Hilfe Oberösterreich)

Website

Austria

CF Austria (Cystische Fibrose Hilfe Österreich)

Website

Austria

CF-Hilfe Wien

Website

Austria

CF Team Tirol und Vorarlberg

Website

Austria

CF-Clearly Future

Website

Azerbaijan

Public Association for Helping Cystic Fibrosis Patients (KİFYİB)

Belgium

Muco vzw

Website

bosnia-herzegovina

Association of cystic fibrosis in Bosnia and Herzegovina, Udruženje za cističnu fibrozu u Bosni i Hercegovini

Website

Bulgaria

Cystic Fibrosis Association Bulgaria

Website

Croatia

Drustvo za cisticnu fibrozu – Hrvatska Cystic fibrosis society – Croatia (CF Croatia)

Website

Croatia

Croatian Cystic Fibrosis Association (CF CRO) Hrvatska udruga oboljelih od cistične fibroze (Croatian)

Website

Cyprus

Cyprus Cystic Fibrosis Association

Czech Republic

Czech Cystic Fibrosis Association/Klub nemocnych cystickou fibrozou, o.s.)

Website

Denmark

The Danish Cystic Fibrosis Association

Website

Estonia

Estonian Cystic Fibrosis Society

Website

Finland

Suomen CF-yhdistys ry. (The CF Association in Finland )

Website

France

Vaincre la Mucoviscidose

Website

Germany

Mukoviszidose e.V.

Website

kazachstan

Germany

DCFH

Greece

Hellenic CF Association

Website

Greece

Association for cystic fibrosis Greece

Website

Hungary

CF Betegek Egyesülete – Association of CF Patients

Website

Ireland

Cystic Fibrosis Association of Ireland (CFAI)

Website

israel

Cystic Fibrosis Foundation of Israel

Website

Italy

Lega Italiana Fibrosi Cistica (LIFC)

Website

Kosovo

Association for Persons with Cystic Fibrosis in Kosovo

Website

Latvia

Cystic Fibrosis Society of Latvia

Website

Lithuania

Lithuanian Cystic Fibrosis Asociacion

Website

Luxembourg

Association Luxembourgeoise de Lutte contre la Mucoviscidose ALLM

Website

Macedonia

Zdruzenie za Cisticna Fibroza

Moldova

National Association of Cystic Fibrosis in Moldova

Website

Montenegro

ASSOCIATION FOR HELP AND SUPPORT FOR PEOPLE WITH CF MONTENEGRO-CG MONTENEGRO

Website

netherlands

Nederlandse Cystic Fibrosis Stichting

Website

Norway

Norwegian cystic fibrosis association

Website

Poland

Polish Society Against Cystic Fibrosis

Website

Poland

Polskie Towarzystwo Walki z Mukowiscydozą

Poland

Polish CF Foundation, Matio Foundation

Website

Portugal

ANFQ – Associação Nacional de Fibrose Quística (ANFQ – National Association for Cystic Fibrosis)

Website

Romania

Asociata de Fibroza Chistica Din Romania (Romanian Cystic Fibrosis Association)

Website

Russia

CF Russia

Website

Russia

Interregional NGO “Help to CF patients”

Website

Serbia

Association for Help and Support to people with Cystic fibrosis of Serbia

Website

Slovakia

Slovak CF Association

Website

Slovenia

Društvo za cistično fibrozo Slovenije

Website

Spain

Federación Española de Fibrosis Quística, CF Spain

Website

Sweden

Swedish CF Association – Riksförbundet Cystisk Fibros

Website

Sweden

Fonden Citronfjärilen

Website

Switzerland

Cystic Fibrosis Switzerland (CFS)

Website

Turkey

Kistik Fibrozis Yardımlaşma ve Dayanışma Derneği

Website

uk

Cystic Fibrosis Trust

Website

Ukraine

Ukrainian Association of care of patients with cystic fibrosis

Website

CF Hilfe OÖ (Cystische Fibrose Hilfe Oberösterreich)

Website

CF Austria (Cystische Fibrose Hilfe Österreich)

Website

CF-Hilfe Wien

Website

CF Team Tirol und Vorarlberg

Website

CF-Clearly Future

Website

Public Association for Helping Cystic Fibrosis Patients (KİFYİB)

Muco vzw

Website

Association of cystic fibrosis in Bosnia and Herzegovina, Udruženje za cističnu fibrozu u Bosni i Hercegovini

Website

Cystic Fibrosis Association Bulgaria

Website

Drustvo za cisticnu fibrozu – Hrvatska Cystic fibrosis society – Croatia (CF Croatia)

Website

Croatian Cystic Fibrosis Association (CF CRO) Hrvatska udruga oboljelih od cistične fibroze (Croatian)

Website

Cyprus Cystic Fibrosis Association

Czech Cystic Fibrosis Association/Klub nemocnych cystickou fibrozou, o.s.)

Website

The Danish Cystic Fibrosis Association

Website

Estonian Cystic Fibrosis Society

Website

Suomen CF-yhdistys ry. (The CF Association in Finland )

Website

Vaincre la Mucoviscidose

Website

Mukoviszidose e.V.

Website

DCFH

Hellenic CF Association

Website

Association for cystic fibrosis Greece

Website

CF Betegek Egyesülete – Association of CF Patients

Website

Cystic Fibrosis Association of Ireland (CFAI)

Website

Cystic Fibrosis Foundation of Israel

Website

Lega Italiana Fibrosi Cistica (LIFC)

Website

Association for Persons with Cystic Fibrosis in Kosovo

Website

Cystic Fibrosis Society of Latvia

Website

Lithuanian Cystic Fibrosis Asociacion

Website

Association Luxembourgeoise de Lutte contre la Mucoviscidose ALLM

Website

Zdruzenie za Cisticna Fibroza

National Association of Cystic Fibrosis in Moldova

Website

ASSOCIATION FOR HELP AND SUPPORT FOR PEOPLE WITH CF MONTENEGRO-CG MONTENEGRO

Website

Nederlandse Cystic Fibrosis Stichting

Website

Norwegian cystic fibrosis association

Website

Polish Society Against Cystic Fibrosis

Website

Polskie Towarzystwo Walki z Mukowiscydozą

Polish CF Foundation, Matio Foundation

Website

ANFQ – Associação Nacional de Fibrose Quística (ANFQ – National Association for Cystic Fibrosis)

Website

Asociata de Fibroza Chistica Din Romania (Romanian Cystic Fibrosis Association)

Website

CF Russia

Website

Interregional NGO “Help to CF patients”

Website

Association for Help and Support to people with Cystic fibrosis of Serbia

Website

Slovak CF Association

Website

Društvo za cistično fibrozo Slovenije

Website

Federación Española de Fibrosis Quística, CF Spain

Website

Swedish CF Association – Riksförbundet Cystisk Fibros

Website

Fonden Citronfjärilen

Website

Cystic Fibrosis Switzerland (CFS)

Website

Kistik Fibrozis Yardımlaşma ve Dayanışma Derneği

Website

Cystic Fibrosis Trust

Website

Ukrainian Association of care of patients with cystic fibrosis

Website

How 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. 

CFE’s  General Assembly meets annually and approves the organisation’s Annual and Financial Reports. CFE’s accounts are also audited yearly.

CFE thanks CFE members, CFE corporate partners, the European Commission, foundations and individual contributors who help make CFE’s work possible.