As 2025 comes to an end, ELF is reflecting on the hard work and highlights of our Patient Advisory Group members this year. Learn about their projects and achievements, and how you can get involved in 2026.
ELF supports 12 Patient Advisory Groups (PAGs), each focused on specific lung condition. These groups bring together people with lived experience and give them the opportunity to work alongside healthcare professionals to share perspectives and support projects that can improve treatment, care and patient experiences.
The ELF PAGS support a variety of projects and initiatives, such as:
This year, we are celebrating their commitment by looking back on the many achievements across all groups.
To learn more about their activities, hover or tap on the images below.
2025 marked the revival of the Aspergillosis PAG, welcoming new members Pierre, Pamela, Marcela, Tom and Martin. The group contributed to the new ELF aspergillosis information page, supported the ERS task force on chronic pulmonary aspergillosis and took part in the Global Voices campaign. Some members also met in person for the first time at the ERS Congress in Amsterdam.
More recently the PAG hosted the first ELF Aspergillosis Patient Conference, co-chaired by Lisa and Tom. In 2026, the PAG hopes to welcome members from more countries to continue raising awareness of Aspergillosis.
The Asthma PAG continued a wide range of activities to improve asthma research and care in 2025. Members contributed to defining “remission” for people living with moderate to severe asthma, explored the specific challenges faced by older adults and examined the role of comorbidities in managing severe asthma. Their insights were also recognised in the recent Lancet series on asthma prevention.
In September, the group was well represented at the ERS Congress in Amsterdam, with five members sharing experiences and contributing to important discussions within this year’s programme.
The year concluded with the second Severe Asthma Patient Conference, co-designed by the Asthma PAG and professionals from the SHARP research network. The event brought together 247 participants from 75 countries to learn about severe asthma, related conditions and new treatments. The conference recording is now available online.
PAG members are actively involved in developing new guidelines for severe asthma treatment for both adults and children, which will be published in 2026.
This year, the Bronchiectasis PAG hosted the 5th annual Bronchiectasis Patient Conference, developed in partnership with EMBARC. The online event welcomed 529 attendees from 63 countries, with 70% identifying as a person living with bronchiectasis – the highest proportion of patients attending the conference to date.
Throughout the year, the group supported the development of several guidelines and resources, including the Sputum guide and the Nebuliser and Inhaler guide, designed to help people living with bronchiectasis understand how to use these devices effectively and choose the right one for them.
The PAG also developed the bronchiectasis patient checklist, which can be downloaded by patients and brought to appointments to help ensure patients receive accessible information and guidance to manage their condition.
The Childhood Bronchiectasis PAG brings together parents and patient representatives to play an important and active role in the ChildBEARNet CRC as members of the steering group.
In 2025, the PAG helped to develop lay summaries on information about childhood bronchiectasis, such as the childhood bronchiectasis registry. The PAG have been involved in several ERS task forces to ensure the patient view is considered. These include:
The Chronic Cough PAG held four ‘cough and coffee’ meetings during 2025. These online sessions give members an opportunity to connect with healthcare professionals, share knowledge and experiences and ask questions in an informal setting.
Two members joined a new task force to help define chronic cough as a disease rather than a symptom, ensuring the patient perspective is included in this important work.
Members also attended the ERS Congress in Amsterdam, where they presented recent PAG activity at a meeting of the NEuroCOUGH CRC and led a discussion on priorities for people living with chronic cough.
In 2025, the COPD PAG welcomed several new members including Ludo, Mascha, Nicole and Pierre, bringing new perspectives from people living with COPD and those caring for loved ones affected by the condition.
PAG member Mascha van Oers spoke at an event focused on palliative care for people with COPD and interstitial lung disease. Mascha shared her experiences and insights into living well with a chronic lung disease. Rikki and Ludo also shared their perspectives on how best to support people with COPD and their experiences of caring for a loved one towards the end of life as part of the EU PAL-COPD project.
The PAG are supporting a new task force developing a core outcome set for COPD maintenance treatment. This will help ensure future research measures what matters most to patients. PAG members Tessa Jelen and Nicole Hass joined the steering committee to represent patient perspectives.
Lung Cancer PAG member Janette Rawlinson was part of a task force that published guidelines on Fitness for Curative Intent Treatment of Lung Cancer. The group supported the development of a lay version of the guidelines and Janette shared her experiences in a Guidelines in Focus video.
Earlier this year, Janette was honoured by invitation to meet the King and Queen of England for her contributions to community-based cancer care. Another PAG member, Ivica Belina, spoke at an ERS online scientific workshop on lung cancer screening and early-stage lung cancer.
The Pulmonary fibrosis (PF) PAG continued its work to develop resources on lung transplantation, in collaboration with the ELF Working Group and the Chair’s Campaign. The group is focused on providing clear, accessible information for people living with pulmonary fibrosis and their caregivers, covering the period before and after transplantation through guides, webinars and factsheets, including country-specific information.
Members of the PAG are passionate advocates for the importance of palliative care. Ron and Maxine Flewett shared their experiences of living with idiopathic pulmonary fibrosis (IPF), highlighting the value of early and ongoing palliative care for both patients and carers. Their insights on the considerations for people living with interstitial lung disease (ILD) were warmly received by healthcare professionals. at an ERS training event to improve understandings on how best to support people with advanced COPD and ILD.
Members of the Pulmonary Hypertension (PH) PAG were actively involved in a range of task forces and Clinical Research Collaborations (CRCs) in 2025. Their work included:
Through these activities, PAG members helped ensure that the perspectives of people living with pulmonary hypertension are represented in both research and clinical guidance. The PAG also supported the ELF team with an article for World PH Day, which explored members’ experiences of living with the condition, as well as the impact on their quality of life.
The Sarcoidosis PAG supported the application and launch of the new SARCOIDOMICS CRC. Members of the PAG are on the steering group, leading on ensuring outcomes are patient focused.
The group also contributed to the development of new resources, including a patient leaflet on steroid use in sarcoidosis treatment. PAG members were co-authors on an article forming the basis of the leaflet, which will be translated and adapted for use in different countries and cultures in 2026.
The PAG also attended the 4th National Conference on Sarcoidosis in Bari, where members co-chaired sessions and attended as speakers across sessions, ensuring the patient perspective was highlighted throughout the conference.
Members of the Sleep and Breathing Disorders PAG, Mark de Quidt and Luca Roberti, attended the ERS Sleep and Breathing conference in April. Luca presented on an initiative by his patient organisation Apnoici Italiani to identify people in Italy with undiagnosed sleep apnoea.
The PAG also supported ELF’s virtual ‘Living with sleep and breathing disorders’ patient conference, which was co-chaired by Luca. The event welcomed 147 participants from 30 countries.
The group also helped shape a survey on patient experiences of being diagnosed and treated for sleep and breathing disorders, which has now reopened.
The ELF team would like to say a huge thanks to all of our patient advisory groups and those who have supported their activities in the last year. Your work ensures that people living with lung conditions can play an important and central role in respiratory care and research.
If you are interested in joining a Patient Advisory Group or would like further information, please get in touch at info@europeanlung.org.
If you are interested in getting involved with patient involvement and advocacy, sign up to our free, online, self-learning programme, the European Patient Ambassador Programme. EPAP introduces patients and carers to some of the basic skills and knowledge needed to represent yourself and others successfully.
