Figure 2 shows the number of national and European patient organisations in the respiratory field, and the specific disease areas covered by their activities (more than one could be selected in the survey). Asthma was best represented (by 51% of patient organisations who responded), followed by allergy (42%) and COPD (39%). Some 23 patient groups work with patients with CF. Other diseases listed by respondents include sarcoidosis, lymphangioleiomyomatosis, mesothelioma, primary ciliary dyskinesia, obliterative bronchiolitis, aspergillosis and rare and orphan lung diseases.
ELF brings together a network of patient organisations from across Europe committed to working together to improve patient care in Europe. This group actively input into the work of the ERS, by being involved in task force and guideline groups, by providing patient speakers at the ERS annual conference and by taking part in EU advocacy work and in public awareness and media campaigns. Pan-European and national patient groups also actively involve ELF, the ERS and other European and global healthcare professional organisations as partners in their projects and advocacy.
|The European Federation of
Asthma and Allergy Patients
|A network of European allergy, asthma and COPD patients’ associations uniting national patient associations at the European level. EFA aims to make Europe a place where people with allergy, asthma and COPD have the right to the best quality of care and a safe living environment and to live uncompromised lives, and are actively involved in decisions influencing their health|
|CF Europe (CFE)||CFE is the federation of national CF associations in Europe and represents people with CF and their families from 39 European countries. CFE works in close collaboration with other international organisations and is an active partner in several European projects|
Association (PHA) Europe
|The primary objective of PHA Europe is to establish close cooperation between the members of the organisation, European institutions, international organisations and public institutions worldwide|
|Alfa Europe||Alfa Europe’s aim is to provide a European information and resources network for patient support groups and linked associations, health professionals, institutions and industry who wish to improve and extend their knowledge of α1-antitrypsin deficiency|
|European LAM Federation||The European Lymphangioleiomyomatosis (LAM) Federation focuses on supporting LAM research and coordinates communication with existing LAM patient groups|
Table 1 – Pan-European patient organisations working with the European Lung Foundation. Descriptions are adapted from the organisations’ own statements.
In order to facilitate this interaction, ELF is developing a training programme for patients and their carers, to give them the knowledge and confidence to interact with professionals, policy-makers and the media (www.EPAPonline.eu). This programme aims to provide information to help patients discover how they can play a role in the development of guidelines, research and policy and also to signpost them to other European resources, such as the European Patients‘ Academy on Therapeutic Innovation (EUPATI) project, which aims to provide information to patients on medicines research and development (www.patientsacademy.eu).