Since the first meeting of the Patient Advisory Committee in Amsterdam last year, the advisory committee has continued to provide valuable feedback upon ELF activities, helping the ELF to develop its network of European patient organisations, working together to share information and successes, to support each other to develop both at the national and European level.
During Congress the PAC met for a productive morning of information sharing and discussion. The ELF provided an update on their projects and activities, and thanked the patient organisations for their input into the WSD campaign and development of a patient organisation chapter for the new White Book.
Committee members were invited to vote on which ERS Congress 2013 symposia should have patient input, and to suggest topics for patient symposia for ERS Congress 2014. The ELF looks forward to collaborating with PAC members on these projects.
During the meeting information was also given on EFA’s access to the air travel lobbying project, the establishment of the European Sleep Apnoea Federation, the progress of the European COPD Coalition (ECC), and with mention of the upcoming EAACI International severe Asthma Forum, and IPF Week (23rd-30th September).
ERS Congress is a great opportunity for patient organisations to come together and be empowered by each other’s activities and we hope that the Patient Advisory Committee will continue to foster this sense of European collaboration between patients, professionals, and patient organisations.
The meeting was chaired by Monica Fletcher (ELF Chair) with Pippa Powell (ELF Head). The following patient organisation representatives attended the meeting:
- Alpha Europe Federation (Alan Heywood-Jones)
- Association Italiana Pazienti BPCO Onlus (Rosanna and Fausta Franchi)
- Asthma UK (Malayka Rahman)
- Long Fonds (formerly Astma Fonds) (Pim de Boer)
- Austrian Lungenunion (Otto Spranger)
- CF Europe (Hilde de Keyser)
- EFA (Susanna Palkonnen)
- EFA/ ELF Council (Breda Flood)
- European LAM Federation (Iris Bassi)
- FFAAIR (Liliya Belenko Gentet)
- Global Allergy and Asthma Patient Platform (GAAPP) (Antje-Henriette Fink-Wagner)
- June Hancock Mesothelioma Research Fund (Kate Hill)
- Lovexair (Shane Fitch)
- PHA Europe (Juan Fuertes)
- Romanian Tuberculosis Association (ARB-TB) (Radu Septelici)
The meeting was also attended by Archie Turnbull (Executive Director, ERS – Secretary, ELF). His attendance reflects the high value that the ERS place in patient involvement in scientific activities, and appreciation of the role of patient organisations in the lives of people with respiratory conditions.
If you would like more information about the ELF’s patient organisation network or patient involvement in ERS activities, please contact us.