The ERS International Congress 2019 in Madrid was a great opportunity for ELF to work with people with lung conditions, researchers and healthcare professionals, promoting lung health through a series of exciting events, activities and sessions.
Patient Organisation Networking Day
The ERS Congress began with the annual ELF Patient Organisation Networking Day, which gathered 95 representatives from over 50 patient organisations from around the world.
During the day, presentations were given by keynote speakers and patient organisation representatives, focusing on this year’s theme: ‘Patient Organisations 2030’. The presentations sparked interesting discussions on clean air, data management and digital health, as well as innovative activities and plans from patient organisations.
For the first time, presentations were also live-streamed on the ELF Facebook page, opening the day up to people who couldn’t attend. Delegates also took part in a Twitter competition throughout the day, which was very popular and lead to the hashtag #PatientVision2030 trending on Twitter!
Watch Chris Knoet talk about his experience of Patient Organisation Networking Day.
EPAP Spanish launch
Patient Organisation Networking Day in Madrid also saw the launch of the European Patient Ambassador Programme (EPAP) in Spanish. EPAP is a free online course that teaches people with chronic conditions the skills that they need to represent themselves and others in a range of activities. The Spanish EPAP version was created and shared in collaboration with SeparPacientes, Fundación Lovexair, FENAER and many other Spanish-speaking volunteers and organisations.
Healthy Lungs for Life (HLfL)
This year, the HLfL Madrid campaign was launched at a press conference in Madrid city centre. Over two days, the HLfL marquee attracted just under 900 people to take a free lung function test (spirometry) and learn more about protecting their lung health. Visitors also enjoyed interactive activities, such as pedaling a static bike to make a smoothie and playing games and quizzes about air pollution. The event was supported by NDD, who provided all the spirometers for the event.
As part of the Healthy Lungs for Life campaign, ELF and ERS, along with local partners SeparPacientes, Fundación Lovexair and FENAER, organised a ‘Meet the Expert’ event at the Ministry of Health. Around 60 people attended to listen to experts talk about how to protect their lungs through stopping smoking, breathing clean air, taking the active option and getting vaccinated.
The key messages of the campaign were also promoted to around 22,000 delegates at the Congress itself. Delegates could choose to attend sessions on HLfL themes and took part in a ‘Scavenger Hunt’ (a friendly app-based competition where people completed challenges like walking 10,000 steps a day and pledging to get vaccinated).
The ELF stand was a great place for delegates to learn about ELF activities, in particular involving patients in research, and ELF patient information and resources. Visitors to the ELF stand also learned about holding their own Healthy Lungs for Life event and could pick up free HLfL toolkits.
This year at the stand, ELF Chair Isabel Saraiva presented awards for promising abstracts in patient involvement to Dr Helle Marie Christensen and Dr Masashi Kanezaki, and an award for the best HLfL abstract to Dr Norrice Liu. After the awards, we sat down with Dr Liu for a video about air quality and lung health, and asked her to explain her research into children’s exposure to air pollution.
This year the ELF Award was granted to Dr. Maria Neira, Director of Public Health, Environmental and Social Determinants of Health at the World Health Organization (WHO). Dr. Neira received the award for her outstanding commitment to improving air quality globally.
Read about Maria Neira’s achievements and watch her acceptance video.
12 people living with lung conditions came to the ERS Congress in Madrid to speak in sessions about their condition. From discussing the long-term management of bronchopulmonary dysplasia (BPD) to the challenges of managing multiple lung infections, patient experiences were heard by delegates throughout the Congress.
Watch Matt Cullen talk about his experience of being a patient speaker at ERS Congress.
Patient Advisory Groups (PAGs)
ERS Congress is also an opportunity to bring together members of our patient advisory groups (PAGs) to discuss current projects and progress.This year we held meetings with our bronchiectasis, COPD, sarcoidosis, sleep apnoea and European Patient Ambassador Programme (EPAP) PAG members.
The ELF team was very pleased to welcome new faces and old friends to the ERS Congress, and we’re already looking forward to next year’s event in Vienna. In the meantime, we have lots of exciting plans to keep pushing for better lung health for everyone. To keep up to date with the latest ELF news and ways you can get involved, sign up to our free monthly newsletter.
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