Living with CF
Cystic Fibrosis (CF) or mucoviscidosis is a genetic condition affecting over 54,000 people across Europe. People with CF experience a build-up of thick, sticky mucus in the lungs, digestive system and other organs, resulting in a wide range of symptoms affecting the entire body. It is vital that people with CF receive regular care from a multidisciplinary team in a specialised CF clinic and access the latest available treatments, until a cure is found.
CF Europe works to ensure that people with CF live to their full potential in society, having access to optimal, collaborative care. We work alongside the CF community to bring evidence of existing and emerging needs of people with CF to the relevant research and policy stakeholders and to strengthen patient organisations across Europe.
What we do
Care
CF Europe ensures that the patient’s perspective is included and considered in any future improved European Standards of Care. In addition to this, CF Europe supports its members to achieve access to the best possible care in their country by informing patients and professionals, by organising training, lobbying on a European level, and supporting lobbying on a national level.
Research
CF Europe is dedicated to stimulating CF research in Europe that is in line with patients’ needs and research priorities. Our strategic work on scientific research is led and coordinated by the Patient Organisations Research Group (PORG), a CF Europe working group formally established in 2016. CF Europe is well connected to the European Cystic Fibrosis Society (ECFS), with active representation in the Executive Committees of the Patient Registry and the Clinical Trials Network. CF Europe is a work package leader for communication and dissemination in the Horizon 2020 HIT-CF Europe project.
Advocacy
CF Europe advocates directly with relevant stakeholders, such as European Institutions and industry. We have built and continue to develop these relationships with key actors to strengthen our voice and broaden our reach.
How to get involved
You can get involved with CF Europe’s work in many ways.
Are you a researcher, a person with CF or a caregiver, a CF company or a donor? Do you want to become a member or a volunteer?
Read more here
CF in Europe
With members in over 39 countries across Europe, we cover the needs of more than 54 000 people with CF.
39
Member countries
54000
People with CF