ELF has had a very busy 2017, with lots of exciting activities taking place across our different focus areas – and a new Chair!
Read below for some of the highlights of our outgoing Chair, Dan Smyth, and incoming Chair, Isabel Saraiva. Many thanks to everyone who made these activities and achievements possible.
Isabel Saraiva joins ELF as our second patient Chair
Following Dan Smyth’s hugely successful 3-year term as ELF’s first patient Chair, we were delighted to welcome Isabel Saraiva as our second patient Chair during the ERS International Congress in September.
Isabel, who has chronic obstructive pulmonary disease (COPD), has worked with RESPIRA – the Portuguese Association of people with COPD and other chronic respiratory disorders for over a decade.
Read more about Isabel in an interview she did just after becoming Chair.
Presenting Colin Sullivan with the ELF Award
At the opening session at this year’s ERS International Congress, outgoing ELF Chair Dan Smyth presented the ELF Award to Professor Colin Sullivan, the inventor of continuous positive airway pressure (CPAP).
The Award recognised Professor Sullivan’s huge contribution to improving the lives of people living with sleep apnoea – an issue personally felt by Dan, who uses CPAP himself.
ELF information resources available in more languages
ELF factsheets are now available in 27 languages –including Turkish, Finnish, Danish, Swedish, Ukrainian, Croatian, Czech, Serbian, Albanian, Slovenian and Vietnamese.
This year, we produced factsheets and guidelines on the following topics: mould, damp and the lungs; quitting smoking – the benefits; managing bronchiectasis; living well with COPD; and LAM.
We are very pleased that more people with lung conditions will be able to benefit from our high-quality information, and that more healthcare professionals can refer their patients to factsheets in their language.
Huge thanks go out to all of the volunteer ERS members who help with the translation process.
Go to the ELF factsheet page.
Air travel with a lung condition – website update, symposium and further cooperation with travel industry
Improving air travel for people with lung conditions continued to be a priority for ELF in 2017. This year, we updated the air travel section of our website, adding a video on the fit to fly test, as well as information on how to arrange special assistance at the airport.
At the ERS International Congress in September, we also arranged a symposium dedicated to the topic. The packed session featured input from patients, healthcare professionals and industry, inspiring lots of questions and feedback from the audience. Read about the symposium and watch the full session.
Since the symposium, we have carried on working with the travel industry, including speaking about the issues people with lung conditions face when travelling by air at the Heathrow Access Advisory Group meeting at Heathrow Airport earlier in December.
We are also working on a poster for clinics and GP surgeries and a factsheet giving travel tips for people with lung conditions.
Launch of online platform raising awareness of work-related lung conditions
In November we launched an online quiz and information platform on work-related lung conditions.
The quiz was designed with a steering group made up of experts in work-related lung conditions, primary healthcare professionals and patient representatives.
It is currently in English, but we hope to build partnerships that will enable us to translate it into further languages next year.
Patient involvement in new guidelines and the ERS International Congress
ELF has continued to ensure patient perspectives inform clinical practice guidelines and statements, with patient representatives inputting into 25 active ERS Task Forces and 7 Clinical Research Collaborations (CRC). ELF has established patient advisory groups in several key disease areas, including sarcoidosis, severe asthma and chronic cough and for the first time patients were appointed as co-chairs of an ERS CRC. These groups will support a wide range of projects and ensure the ERS’s projects are informed by the real-world experiences of people living with a lung condition.
Each year ELF supports patient involvement in the ERS International Congress as speakers, chairs and demonstrators to highlight the real-world experiences, perspectives and priorities of people living with a lung condition. Read more about patient involvement at the ERS Congress.
Patient organisation network
The ELF patient organisation network continues to grow, with over 220 members across the world. ELF continues to build relationships with partner organisations to strengthen the patient voice in global health advocacy, science and education. We also held a bigger patient organisation networking day at the ERS International Congress which, this time, included participation from primary care professionals.
Read a report about the patient organisation networking day.
Patient priorities – information for patients, by patients
This year we launched two more information websites designed by patients for patients:
Our patient priorities platform now features three patient information sites, including one on lung cancer, the first to be launched.
We partnered closely with ERS experts in each field to ensure that the information is accurate and dedicated patient advisory groups contributed their experiences and expertise to demonstrate how these conditions affect them on a daily basis.
Please direct your patients to these websites, where they will find trusted information in a range of languages, links to support groups in Europe and the latest news and research.
Supporting tobacco control initiatives – Healthy Lungs for Life
This year, the Healthy Lungs for Life campaign carries on the theme of ‘Breathe clean air’, aiming to raise awareness of the importance of clean air and a smoke-free life for lung health.
As part of this, ELF collaborated with the ERS Tobacco Control Committee on an infographic factsheet, ‘Quitting smoking – the benefits’, which aims to highlight the positives of smoking cessation.
The Healthy Lungs for Life campaign was launched in Milan at the ERS International Congress in September.
Read more about the launch of this year’s Healthy Lungs for Life campaign.