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.

CF roundtable of companies

The CF RoundTable of Companies (CFRToC) enables CF Europe, patient representatives, CF experts, and companies that have an impact on people with CF to increase mutual understanding and address shared concerns in a neutral setting.

The CFToC meets twice a year to discuss topics chosen by CFE and companies belonging to CFRToC. Read more detailed information on CFRToC on our dedicated page. 

CF community advisory board – CAB

The CF Community Advisory Board (CAB) is an independent, autonomous and international board. The CAB was set up by CF Europe to increase patient feedback on current innovations, treatments and care. The CAB consists of a group of trained patient representatives from  over 13 different countries, including Belgium, Finland, France, Hungary, Israel, Italy, Moldova, the Netherlands, Portugal, Spain, Sweden, Turkey, and the UK. Membership of the CFE CAB is decided by the CFE Board. Read more detailed information on CAB on our dedicated page

European reference networks – ERN

European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to tackle complex or rare diseases and conditions that require highly specialised treatment and concentrated knowledge and resources.

CF Europe is actively involved in the ERN-Lung, the European Reference Network of Rare Lung Diseases. In both the general network and in the sub network for CF, CFE represents patient’s views by participating in the European Patient Advocacy Group (ePAG).

European Lung Health Group

Together with 8 other European level patient groups, CFE developed the Breathe Vision for 2030, a collective initiative driven by European level patient groups and healthcare professionals that have come together in a European Lung Health Group.

Breathe Vision for 2030 seeks to influence European and EU policy priorities to maximise their benefits for respiratory health. As we stand firmly together to convey this Vision, we promote increased awareness and understanding of respiratory diseases in society.

Together and individually, we engage with European level stakeholders to encourage them to recognise respiratory health as a public health priority and to take action to improve the quality of life of people with a lung disease. A key mechanism to achieve this is through the MEP Lung Health Group.