EFA Oxygen Harmonisation Project
In the last two months EFA sent more than 50 questions in different European languages to the European Aviation safety Agency (EASA) regarding the use of oxygen on planes. EASA is now willing to help EFA to address this issue. However, since the organisation deals mainly with safety issues, EFA will have to address the European Commission responsible for rights of passengers. In the meantime, EFA continues collecting stories from patients travelling with oxygen in European countries for a brochure which will provide insight on what to do and how aircraft staff members can be prepared for passengers travelling with oxygen. All patients interested in submitting their stories should send them to the EFA Fundraising and Programme Officer Antje Fink-Wagner (firstname.lastname@example.org) and to EFA Membership and Programme Officer (email@example.com).
EFA COPD Project – Minimum Standards for COPD Care for Europe!
EFA COPD working group has finished preparation of a new questionnaire for EFA Members. The questionnaire aim at outlining the guidelines for minimum standardization of care for COPD patients in Europe from patient perspective and will be sent out to EFA Members as soon as possible. The EFA COPD paper, prepared in collaboration with the International Primary Care Respiratory Group (IPCRG), “Real world burden of COPD: A cross-sectional retrospective analysis focusing on employed and ‘not in paid employment’ patients in Europe” with data from 5 EU countries was submitted to the Journal of Health and Productivity and is waiting for approval. EFA asked MEPs to sign the foreword of the publication and is now trying to secure more signatures.
EFA represented patients’ interests at the AirPROM AGM in Barcelona
In April 2013 EFA representatives attended the AirPROM Annual General Meeting in Barcelona. This EU funded project aims at developing mathematical models of lungs which will eventually lead to personalised treatment of asthma and COPD patients. With the AGM 2013 AirPROM has entered in its 3rd year and all members of the project had the opportunity to meet again and discuss developments and future targets.
AirPROM project has brought together people from different professional backgrounds (scientists, doctors, IT professionals and patients’ representative) who are organised in 9 work packages (WPs). The main aim of the meeting was to update participants on the progress within all working groups, deepen the integration and collaboration among all teams and identify future objectives.
According to leaders of respective work packages, AirPROM project has collected substantial datasets from various clinical trials. Researchers now have to align data across all existing cohorts and develop validated predictive models of airways. The main future task thus is to integrate all WPs, develop validated models which will eventually lead to personalised treatment of patients and show success of the project through publications and knowledge platforms.
At the meeting clinical trials including Anti-Eosinophils Study and Thermoplasty Study were also discussed. Interestingly enough, the research results show that people with mild asthma and patients with severe asthma have similar lung function. Even though severe asthmatics feel worse, models don’t show decreased lung function.
The involvement of EFA in AirPROM includes representation of patients with asthma and COPD, preparation of dissemination materials and raising awareness of the project. The progress of AirPROM will also be discussed at the ERS Congress which is being prepared in collaboration with EFA.
You can find more information about AirPROM project here.