ELF and patient involvement at the ERS International Congress 2014

People with lung conditions and patient organisations provided their perspectives at this year’s ERS Congress.

Biggest and best patient involvement in ERS Congress 2014

People with lung conditions and patient organisations provided their perspectives on respiratory healthcare at this year’s ERS International Congress, which was attended by approximately 22,000 healthcare professionals.

Each year ELF works to involve patients and patient organisations in a range of activities taking place at the ERS Congress.

European and national patient organisations

More than 40 representatives from nearly 30 European and national patient organisations joined us in the ICM Munchen this year, representing a huge range of lung conditions. ELF organised a programme of networking events and shared learning opportunities. This included a workshop led by the ERS Junior Members Committee on how patient organisations can produce successful abstracts, posters and presentations at scientific conferences to report on their activities and work; and a workshop on how patient organisations can work with the European Medicines Agency (EMA) to ensure that patients full information about their medications in a clear format The organisations also met to discuss ELF/ERS activities and how they can all work together with ERS to improve the situation for patients across Europe. 

ELF and the patient organisations shared a stand in the exhibition area alongside the ERS stand to showcase the joint impact of patient activities across Europe.

LAM priority-setting workshop

This year’s workshop to bring together patients and professionals to discuss key issues focused on Lymphangioleiomyomatosis (LAM). The aim of the workshop was to discuss the priorities of the different stakeholders with an interest in LAM (patients, patient organisations, healthcare professionals and industry) and to identify potential solutions.

16 professionals and 23 representatives from LAM patient organisations took part in the 3-hour workshop covering a wide range of topics to improve LAM treatment and care, including new drugs, taking part in research, lung transplantation, patient information and living with LAM.

The workshop was followed by a presentation from Head of the European LAM Federation, Iris Bassi as part of the mainstream scientific programme, “Advances in care for patients with lymphangioleiomyomatosis (LAM)”.

A report on the workshop will be published early in 2015.

The slides from the symposium are available online.

Symposia and educational sessions 

ELF identifies scientific and educational sessions where the theme would benefit from the input of a person living with the condition and whose personal experience could help illustrate the issues presented.

This year patient speakers took part in symposia on the following topics:

  • Smoking cessation for people with a lung condition
  • Home mechanical ventilation  
  • Patient involvement in EU research projects
  • Chronic cough
  • Sleep apnoea and CPAP
  • COPD and lung transplantation
  • Lymphangioleiomyomatosis (LAM)

Task Force and EU project meetings

For the first time, patient representatives took part in meetings at Congress to discuss progress in EU level and ERS research projects.

Six people informed the ongoing development of these projects to ensure that the patient voice is represented in their outcomes:

  • ERS project to develop new guidelines to improve the diagnosis of primary ciliary dyskinesia 
  • EU project to learn more about different types of asthma to ensure better diagnosis and treatment for each person (U-BIOPRED)
  • EU project to reduce the impact of asthma across Europe by identifying the gaps in asthma research and to set the asthma research agenda from 2016 (EARIP)

Raising the profile of lung health in Munich

This year ELF and ERS worked together with the Deutscher Lungentag and the localLungeninformationsdienst on events for the Munich public as part of the Healthy Lungs for Life campaign. This year’s theme, Breathe Clean Air, saw over 1,700 people take part in free lung testing in Munich city centre over 3 days, with a further 70 people attending two evenings of presentations on clean air and lung health.

Dan Smyth, Chair of ELF:

“This year we were delighted by the enthusiastic response we received from the healthcare professionals and patient representatives attending these activities, and the feedback on the joint ELF and patient organisations stand was great, with patient organisations feeling fully integrated into the Congress, and able to easily network with each other and with healthcare professionals.”

Feedback on ERS Congress 2014

“The congress was simply great and very informative, many thanks for your indefatigable commitment and the brilliant organisation.” – Doris Wollein, LAM Austria

“We appreciate your supporting all patient organisations in such a healthy and positive environment.” – Shane Fitch, Lovexair, Spain

“I really enjoyed the conference and definitely got a lot out of the ELF stand, meetings and workshops – the event in the city centre was also really impressive!” – Ian Jarrold, British Lung Foundation

“I believe that the programme provided for the patients associations, including the preparation of abstract, was auspicious. Through the stand we had plenty opportunities to develop new collaborations with medical societies and specialists in the field. I had the chance to discuss the many possibilities for cooperation, including exchange of experience and comparing treatment with patients associations and societies from Russia, Germany, China, Austria, UK, Brazil and Portugal.” – Marius Dumitru, ARB-TB, Romania

“I appreciated the presentations made during the Abstract Writing Workshop that I found very helpful.” – Giorgio Salerni, Federasma e Allergie Onlus, Italy

“Thank you for the opportunity to participate in the LAM sessions at the ERS meeting in Munich. I especially appreciated the chance to interact with both patients and physicians.” – Dr Joel Moss

“My talk at the Congress was a very nice and a good experience for me. I’m glad I did it. I got a very nice feedback from some people who listened to me.” – Dieter Wilms, COPD and lung transplantation patient speaker

“I learned a lot about improved treatment and healthcare possibilities. Some new contacts with professionals opened additional future opportunities.” – Klaus Geissler, Lungenfibrose, Germany


If you have any questions about patient involvement in ERS Congress, or would like to suggest an event, please contact us.

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