In May the ELF team and patient representatives attended conferences across Europe. Here, we summarise what we did and what we have learnt from these events.
On 8 – 11 May, we were in Athens for the annual meeting of the FRESHAIR4Life project and to promote its activities at the International Primary Care Respiratory Group (IPCRG) World Conference.
Pippa Powell, ELF Director, talked about youth advocacy in the FreshAir4Life meeting. She presented materials from the Healthy Lungs For Life (HLFL) campaign, as well as the many events held across the globe that were funded by HLFL grants. She introduced the newly founded ELF Youth Group for young people aged 16-24, which is chaired by Ed Powell, a 16-year-old patient with bronchiectasis.
On 10 May, Guilherme Mendes, member of the SOLACE Stakeholder Advisory Board, gave a speech on lung cancer screening in Europe and presented the SOLACE project. He spoke about the pilot screening programmes in different countries, including Poland, France, Croatia and the UK, that aim to encourage lung cancer screening for women, hard-to-reach populations and people at higher risk population. In order to do this, promotional materials have been produced in multiple languages, which aim to motivate people to get lung cancer screenings. These resources and materials can all be found on the SOLACE website.
On 11 May, Linda Clephane gave an insightful speech about living day to day as a chronic cough patient. Linda spoke about the challenges of getting a diagnosis and not finding a suitable treatment for her cough. She spoke about how it felt to finally have a name for her condition and to feel part of a community of people that have a similar experience to her with chronic cough. This is important because of the effect that chronic cough has on you mentally, physically and socially, as it could potentially make the person who has it tired or self-aware among other people. She also shared her experience with the “Let’s Talk About Cough Project”.
ELF was represented at a stand in the exhibition hall throughout the IPCRG World Conference where we were able to promote the HLFL campaign, the European Patient Ambassador Programme (EPAP) and the importance of having the patient voice heard.
UNITE4TB is a seven-year project funded by IMI2, dedicated to speeding up and enhancing treatments for drug-resistant tuberculosis (TB). ELF has formed a Community Advisory Group (CAG) for UNITE4TB, including global representatives with extensive experience working with TB-affected communities. Two members of the CAG are TB survivors, offering invaluable insights from their personal journeys.
In May 2024, four CAG members attended the UNITE4TB annual meeting in the city of Uppsala, Sweden. Their presentations underscored the critical importance of involving the TB community in initiatives such as UNITE4TB, ensuring that the project’s focus remains firmly on the needs of those living with TB.
OPTIMA is another IMI2 funded project aiming to improve treatments for lung, breast and prostate cancer. ELF has set up a Public Patient Advisory Board (PPAB) for OPTIMA, comprising patients and patient representatives with lived experience of the three types of cancer.
In May, three PPAB members joined ELF staff at the annual meeting in Madrid, where they advocated for active patient involvement, emphasising that treatments should reflect patient preferences and insights. Additionally, ELF led a workshop on the critical importance of using plain language in communication with patients and caregivers, ensuring that information is clear, direct, and easily understood.
