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 Coordinator for the Twinning Expansion Project

I am leading the Twinning Expansion Project for CF Europe, which expands the support given to CF care centres in Eastern Europe by including patient organisations in twinned mentee and mentor countries. Patient organisations play a pivotal role in identifying and addressing unmet needs and facilitating communications to drive improvements in care.

Board

Stefan Joris

Secretary (Belgium)

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

Audrey Chansard

Vice president (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.

Thierry Nouvel

Board member (France)

The fight against the disease does not stop at the borders of each of our countries. All together, we will defeat cystic fibrosis in Europe.

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 CF, 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

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

Austria

CF Hilfe OÖ (Cystische Fibrose Hilfe Oberösterreich)

Website

Cyprus

Cyprus Cystic Fibrosis Association

Germany

Mukoviszidose e.V.

Website

France

Vaincre la Mucoviscidose

Website

Finland

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

Website

Estonia

Estonian Cystic Fibrosis Society

Website

Denmark

The Danish Cystic Fibrosis Association

Website

Czech Republic

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

Website

Croatia

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

Website

Croatia

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

Website

Kosovo

Association for Persons with Cystic Fibrosis in Kosovo

Website

Latvia

Cystic Fibrosis Society of Latvia

Website

Italy

Lega Italiana Fibrosi Cistica (LIFC)

Website

israel

Cystic Fibrosis Foundation of Israel

Website

Ireland

Cystic Fibrosis Association of Ireland (CFAI)

Website

Greece

Association for cystic fibrosis Greece

Website

Greece

Hellenic CF Association

Website

Germany

DCFH

kazachstan

Hungary

CF Betegek Egyesülete – Association of CF Patients

Website

Montenegro

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

Website

Poland

Polskie Towarzystwo Walki z Mukowiscydozą

Poland

Polish Society Against Cystic Fibrosis

Website

Norway

Norwegian cystic fibrosis association

Website

netherlands

Nederlandse Cystic Fibrosis Stichting

Website

Moldova

National Association of Cystic Fibrosis in Moldova

Website

Macedonia

Zdruzenie za Cisticna Fibroza

Luxembourg

Association Luxembourgeoise de Lutte contre la Mucoviscidose ALLM

Website

Lithuania

Lithuanian Cystic Fibrosis Asociacion

Website

Portugal

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

Website

Sweden

Swedish CF Association – Riksförbundet Cystisk Fibros

Website

Spain

Federación Española de Fibrosis Quística, CF Spain

Website

Slovenia

Društvo za cistično fibrozo Slovenije

Website

Slovakia

Slovak CF Association

Website

Serbia

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

Website

Russia

Interregional NGO “Help to CF patients”

Website

Russia

CF Russia

Website

Romania

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

Website

Poland

Polish CF Foundation, Matio Foundation

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

Albania

Cystic fibrosis friends center

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

CF Hilfe OÖ (Cystische Fibrose Hilfe Oberösterreich)

Website

Cyprus Cystic Fibrosis Association

Mukoviszidose e.V.

Website

Vaincre la Mucoviscidose

Website

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

Website

Estonian Cystic Fibrosis Society

Website

The Danish Cystic Fibrosis Association

Website

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

Website

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

Website

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

Website

Association for Persons with Cystic Fibrosis in Kosovo

Website

Cystic Fibrosis Society of Latvia

Website

Lega Italiana Fibrosi Cistica (LIFC)

Website

Cystic Fibrosis Foundation of Israel

Website

Cystic Fibrosis Association of Ireland (CFAI)

Website

Association for cystic fibrosis Greece

Website

Hellenic CF Association

Website

DCFH

CF Betegek Egyesülete – Association of CF Patients

Website

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

Website

Polskie Towarzystwo Walki z Mukowiscydozą

Polish Society Against Cystic Fibrosis

Website

Norwegian cystic fibrosis association

Website

Nederlandse Cystic Fibrosis Stichting

Website

National Association of Cystic Fibrosis in Moldova

Website

Zdruzenie za Cisticna Fibroza

Association Luxembourgeoise de Lutte contre la Mucoviscidose ALLM

Website

Lithuanian Cystic Fibrosis Asociacion

Website

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

Website

Swedish CF Association – Riksförbundet Cystisk Fibros

Website

Federación Española de Fibrosis Quística, CF Spain

Website

Društvo za cistično fibrozo Slovenije

Website

Slovak CF Association

Website

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

Website

Interregional NGO “Help to CF patients”

Website

CF Russia

Website

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

Website

Polish CF Foundation, Matio Foundation

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

Cystic fibrosis friends center

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. 

You can see how membership fees are calculated here:

Full membership fees are based on each organisation‘s annual operational budget  (previous year) in €
BudgetFee
Less than 10.00020
Between 10.000 and 49.00050
Between 50.000 and 99.000100
Between 100.000 and 499.999200
Between 500.000 and 999.999800
Between 1.000.000 and 1.499.9991.500
Between 1.500.000 and 1.999.9992.500
Between 2.000.000 and 2.499.9993.500
Between 2.500.000 and 2.999.9994.500
More than 3.000.0005.000

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 AGM Minutes 2023

CFE’s financial reports can be found here:

CFE Finances 2021-2022

CFE Financial report 2021-2022

CFE Revisor – Annual financial report

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