Stronger Together highlighted the importance of creating opportunities for PAG members to come together beyond their individual condition areas. By sharing experiences and reflecting openly on how patient involvement can continue to grow, the event reinforced ELF’s commitment to working in partnership with people living with lung conditions and carers across Europe.
On 7 February, ELF hosted Stronger Together, a virtual event bringing together members of its Patient Advisory Groups (PAGs) from across Europe. The event was first suggested by the United Patient Advisory Group (UPAG), who also helped shape the agenda and activities. This was the first event of its kind, providing a dedicated forum for PAG members to connect and share experiences. The meeting was opened by ELF Chair Dimitris Kontopidis and hosted and facilitated by Helen Parks, Chair of the UPAG.
While PAG members regularly work closely within their own condition-specific groups, opportunities to come together across PAGs are less frequent. This event was designed to offer a shared space, enabling people living with different lung conditions, carers and patient advocates to connect, celebrate the achievements of the PAGs and consider how working more closely together could strengthen patient involvement across ELF’s activities.
The event brought together PAG members from a wide range of countries and conditions. An early breakout session and presentations by members of selected PAGs gave participants the opportunity to share their experiences of living with lung conditions and contributing to ELF activities.
Although participants represented different conditions, many described similar challenges. These included delays in diagnosis, limited awareness among healthcare professionals and the need for care that better recognises mental health and quality of life alongside physical symptoms. Participants also spoke about the importance of being listened to and respected as partners in healthcare and research.
For many attendees, hearing these shared experiences reinforced the value of closer connections between PAGs and highlighted opportunities to learn from one another’s work.
The programme included presentations from 3 Patient Advisory Group members, each sharing insights into how patient involvement is shaping research, care and awareness across Europe:
Luciano discussed his involvement in two European Respiratory Society (ERS) research projects on asthma, highlighting how patients can contribute to shaping study design and outcomes.
Chantal shared her experience participating in an ERS task force producing guidelines for lung transplantation, as well as the patient-facing materials that the Pulmonary Fibrosis PAG have helped develop to support people undergoing transplantation.
Tom explained how he and the Aspergillosis PAG have worked to raise awareness of the condition through newspaper articles and the organisation of a patient conference.
The presentations explored a range of ongoing activities, from involvement in European research projects and clinical guideline development to awareness-raising initiatives and the creation of patient information resources. Together, they reflected the diversity of PAG-led work within ELF and a shared commitment to improving outcomes and experiences for people living with lung conditions.
During the event, ELF staff provided an overview of the ELF structure and the different ways patients, carers and patient organisations can contribute across ELF’s work. This includes involvement through PAGs and the United Patient Advisory Group (UPAG), as well as participation in task forces and research collaborations, working groups and advocacy activities.
This session prompted thoughtful questions and discussion, highlighting a strong interest in greater transparency around how patient input feeds into decision-making across ELF. Participants emphasised that understanding both the scope of the work and its impact is an important part of feeling meaningfully involved.
Initial feedback was very positive. Participants said they particularly valued hearing about the breadth of PAG projects underway and learning more about ELF’s work directly from staff. Many noted that gaining a clearer picture of how patient involvement contributes to research, guidelines and advocacy helped strengthen their sense of purpose and impact.
Feedback also showed strong support for holding Stronger Together on an annual basis, alongside ELF’s yearly stakeholder event in October. Participants welcomed the opportunity to meet members from other PAGs and suggested allowing more time for informal networking in future events, as connecting across different conditions was seen as especially valuable.
Members expressed interest in hearing more examples of PAG contributions to various projects and gaining a deeper understanding of how ELF operates. They also suggested that future events could focus on common cross-cutting comorbidities across lung conditions, such as fatigue and breathlessness.
“Very good idea. I hope it will be hold again. So nice to see other PAG members.”
“Clearly the organisers had put a lot of effort in and really cared about how it went and the individuals who were taking part.”
“The openness and friendliness of everyone. The caring support from the ELF team. The opportunity to hear from others with lung issues.”
“I thoroughly enjoyed being part of the event. It was genuinely uplifting to connect with other PAG members across Europe and to hear the passion, creativity and commitment everyone brings to improving life for people living with lung conditions.”
“Thank you for all your efforts put in holding this event. I liked it very much. Informative and interesting event.”
“Many thanks to all of you from ELF and to all the participants. It was a very inspiring, essential and productive meeting.”
The event provided space to look ahead, with discussion around upcoming opportunities for PAG involvement, including activities linked to the European Respiratory Society (ERS) Congress, new digital health initiatives and future advocacy and policy work.
The meeting closed with a guided relaxation session from Liliya Belenko Gentet from the French Federation of Associations of Respiratory Patients (FFAAIR). The ‘sophrology’ practice offered everyone a moment of pause and reflection at the end of the engaging programme.
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Sarcoidosis
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To share my experience
74.5 hours
Stronger Together highlighted the importance of creating opportunities for PAG members to come together beyond their individual condition areas. By sharing experiences, learning from one another and reflecting openly on how patient involvement can continue to grow, the event reinforced ELF’s commitment to working in partnership with people living with lung conditions and carers across Europe.
If you are interested in joining a PAG or learning more about getting involved, you can find further information here or contact the team at info@europeanlung.org
