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Patient organisation reflections on the ERS Lung Science Conference 2016

Patient organisation reflections on the ERS Lung Science Conference 2016

As part of our strategy to enable patients and patient organisations to engage in a range of ERS scientific and educational activities, ELF supported representatives of three patient organisations to attend the annual ERS Lung Science Conference (LSC), held in Estoril, Portugal, 10-13 March 2016.

ELF asked them to share their reflections on the conference and what messages they will be taking home to their members. 

Picture: Shane Fitch, Lovexair and Simone Francia, Federasma e allergie

Marius Dumitru, Romanian association of TB patients (ARB TB)

As an association of patients affected by tuberculosis (TB), the event seemed unlikely to address topics related to TB, a condition that has been eradicated or has a very low incidence rate in most European countries, compared to Romania. I was very pleasantly surprised to find work on the theme of TB infection, including on: the infectious process at the cellular and molecular levels, the defense mechanisms of the body and the effect of specific medication.

One on one discussions with speakers and conference attendees from different countries, particularly from Europe and American, revealed a particular concern for infection control in TB, highlighted by mass population migration and related emigration from potentially infectious areas.

There was an important exchange of ideas and presentations on highly specialised research, such as studies on the efficiency and population effects of vaccinations and drugs.

I made lots of contacts with specialist institutions who conduct studies on TB and infectious diseases, who also found ARB-TB to be an important source of expertise and who would receive the benefits long-term studies in this area.

I thank ELF and ERS for this opportunity where we gained confidence that, in the future, patients in Romania and other affected countries will have the chance to improve their condition, reduce the  duration of treatment and the effects of the medications and disease. We want people with TB to have the best chances with their health as possible!

Simone Francia, Federasma e allergie, Italy

It was a pleasure for me to attend the ERS LSC thanks to ELF. I am part of Federasma, a patient association interested mainly in severe asthma and allergies. At the conference I had the opportunity to meet other patients like me and lots of doctors, much like those who have helped me during my life.

The conference was really interesting and complicated too. It was the first time that I had been to an event like this and I really enjoyed it. I learned a lot of new things, and have taken home some new important information for me and for Federasma, like the various presentations on asthma and one about smog. 

The science presented in this conference will reach many patients in Federasma. I would like to repeat this new experience of science and patient representation by attending the next LSC in 2017. It was also a big opportunity for me to improve my English. I would advise all people who are part of a patient organisation to get informed and try to follow conferences like this one in Estoril, where you can live a new experience in a foreign country and improve your medical information about what new discoveries are going on in the field and the goals people are achieving for the benefit of patients everywhere.

Thank you once again to ELF. 

Shane Fitch, Lovexair, Spain

Omics, microRNAs, epigenetics, the exposome, and disease maps were just some of the terms flying around at the event. From a patient organisation’s perspective, this can seem a bit confusing at first. Are we talking about lung research?

Yes, this is cutting edge research from about 180 international scientists who are leading innovation and discovery in areas including microbiology, physiology, clinical care for patients and bioinformatics. These specialists are looking in new ways at what causes lung conditions, and how these conditions act in our lungs.

The atmosphere of the conference was exciting and positive, with young scientists and their mentors sharing information and their experience to help improve our global knowledge of lung science and innovation. They were also happy to talk to non-experts, such as myself, about the different studies they are carrying out, and did not mind simplifying concepts to help me understand what some of these processes, terms and their analysis mean. However, it would have been useful to have a glossary of some of the terms used in the areas of research being discussed.

Conference sessions highlighted that genetics and genomics are not the whole story, and that we must also look at the multi-systemic reactions and activity which occur in our body by individual mechanisms, the processes in cells, molecules, tissues, organs, fluids and their combined effects. This new way of looking at lung conditions and the body has led to new theories on how to use phenotypes and endotypes to speed up diagnosis and understand more about how a condition will affect an individual.

Read Shane’s summary of other presentations from the LSC