In 2020, even before the COVID-19 pandemic reached Europe, EFA contacted the European level respiratory patient groups and the European Respiratory Society with the idea to get together and define common advocacy topics and goals in Europe to reduce the fragmentation of knowledge around respiratory diseases at the European level.
For a long time, advocacy on respiratory diseases was scattered and largely fragmented at the European level. In the past, EFA has organised alignment meetings with sister patient organisations to discuss common goals.
Set up of the European Lung Health Group
In 2020, and before the COVID-19 pandemic reached Europe, EFA contacted the European level respiratory patient groups and the European Respiratory Society with the idea to get together and define common advocacy topics and goals in Europe. All groups responded positively to the proposal and met several times during the year. EFA, ERS and ELF facilitated the work throughout 2020.
The groups are:
- Alpha-1 Plus Belgium (in representation of Alpha-1 patients at European level)
- Cystic Fibrosis Europe (CF-E)
- European Federation of Allergies and Airways Diseases Patients’ Associations (EFA)
- European Lung Foundation (ELF)
- European Idiopathic Pulmonary Fibrosis Federation (EU-IPFF)
- European Respiratory Society (ERS)
- Lung Cancer Europe (LuCE)
- Pulmonary Hypertension Association Europe (PHA-E)
- Tuberculosis Coalition Europe (TBEC)
Before meeting altogether for the first time, we all responded to a survey to clarify each organisation’s missions, work and priorities, as well as an individual assessment of the general lung health advocacy at European level, and the expectations each organisation would have when joining efforts to the other groups. The results of the survey helped identifying priority themes, gaps and ambitions for our cooperation.
Throughout 2020, we held three meetings, coordinated by EFA together with the European Respiratory Society and the European Lung Foundation. There were two main workstreams: the structure of the group and the development of a common long-term vision for respiratory health.
European Lung Health Group adopts BREATHE Vision for 2030
The group works as an informal easy structure called the European Lung Health Group (ELHG), with the main goal of advancing together and individually on the issues identified in the BREATHE Vision for 2030, its guiding document, in synergy with the MEP Lung Health Group.
The BREATHE Vision for 2030 is the main deliverable of the European Lung Health Group. This document encapsulates the goals that European level patient groups and healthcare professionals would like to achieve in the ten years ahead. It defines specific objectives around the themes of increasing awareness of respiratory health, improving lung health care and research, and tackling COVID-19 and its long-term impacts in Europe.
The BREATHE Vision for 2030 was launched on 27th January 2021 by the MEP Lung Health Group, an informal European Parliament group, built up by the European Respiratory Society, and supported by EFA alongside with the other organisations part of the European Lung Health Group. The European Lung Health Group serves as the Steering Committee for the MEP Lung Health Group.
You can see the event report here.
Advocacy activities of the European Lung Health Group
As part of the BREATHE Vision for 2030, the Group is collaborating on advancing understanding to increase awareness, prevention, care, research and preparedness on issues important for lung health.
In 2021, it will be reaching to major regional, EU and national institutions to present them with our Vision so that it can be embedded in policy and initiatives.
We are actively looking to create partnership and support to reach the goals we envisage in BREATHE. Please endorse it here.
Transparency
EFA thanks its sustainable funding partners AbbVie, Astra Zeneca, Boehringer Ingelheim, Chiesi, GSK and Sanofi-Regeneron for their unrestricted educational grants which have helped the association in coordinating the work towards the Breathe Vision for 2030 paper.