The first training session of the European Respiratory Patient Academy brought together 42 patient advocates from 23 countries for four days in Prague earlier this month. Trainees learned side by side as a community, sharing experiences, supporting each other and working together for better respiratory health across Europe. Read the full report of the first training.
Inside the Academy: what trainees learned in 4 days
Training began with clear lessons on prevention and campaigning. Károly Illy, EFA Vice President, shared Longfonds’ (Netherlands) experience with the Healthy Air Agreement and the Smoke-Free Generation. He explained how coalitions move governments and shared responsibility keeps the momentum for positive change. Real policy impact is possible when facts, personal stories and alliances work together.
We then tackled stigma with Inez de Kruijf-Carter (KNCV TB Plus), where the group looked at how stigma around respiratory disease layers and intersects with daily life. The exercise asked us to frame a patient case in a way that excludes and then analyse the impact. We reworked the same case with inclusive language and discussed practical changes systems could make to support patients.
Scientific literacy for evidence-based advocacy was another big topic of the training programme. With Prof. Anne-Marie Russell (University of Birmingham) and Liam Galvin (EU-IPFF), we practiced reading scientific papers, retrieving data, evaluating methodologies, checking reliability and validity of results. We talked about how to use numbers carefully in policy asks, funding discussions, and clinical conversations, without losing the patient story.
Understanding healthcare systems sat alongside the science. With Salvatore Pirri (Regulatory Pharma Net), participants mapped how healthcare works, who shapes access and why value matters alongside with price in real decisions. The focus was on where patient advocacy can bring evidence and lived experience into those discussions.
Advocacy essentials and patients in research rounded out the picture with Alfonso Augoron from Patvocates. Sessions covered what effective advocacy looks like, how to set clear goals and build coalitions, and how communities can help shape research from the start through skills, confidence, and meaningful engagement.
Leadership and communication tied the learning together. With Jan Geissler (Patvocates) and Sarah Geraghty (The Communications Clinic), the room worked on setting goals, speaking with clarity, building alliances and sustaining organisations. The emphasis was on being strategic rather than only tactical, on grounding advocacy in evidence and using communication to build strong cases that strengthen patient advocates’ voice.
EFA President Marcia Podestà also led a governance session on the essentials of building strong patient organisations: transparency, clear processes, accountability and long-term sustainability. The emphasis was on being strategic rather than only tactical, on grounding advocacy in evidence and on using communication to build strong cases that strengthen patient advocates’ voice.
Every day, trainees led breathing exercises for a pause and a shared focus. After each session, we broke into teams to put skills into practice: setting clear goals, shaping messages, mapping stakeholders, testing evidence and drafting plans to take home. Teams presented, challenged each other’s ideas and adapted them to national contexts.
Working as one respiratory community
What stood out was how quickly the room began to work as one. Trainess compared realities across countries. They tested ideas side by side. They turned lived experience into plans they could take home. This is the point of the project: a stronger, connected respiratory patient community that can act together across diseases and borders for greater prioritisation for lung health and respiratory disease.
Each day closed with a short wrap-up from Steering Committee leads. They collected the day’s key words and takeaways: what was learned, what would support national work and what needed a second look. That rhythm of learning, practicing, and collecting reflections kept the programme anchored in real-world advocacy.
The training was opened and closed by the Steering Committee Chair, Marcia Podestà, who set the work in the context of implementing the WHA Resolution on Integrated Lung Care and Europe’s shared goal to #KeepBreathing.
Thank you to our amazing trainees, the Steering Committee members and our 8 corporate partners for their support in shaping this journey to better respiratory care in Europe!
From left to right: Debra Montague (Lung Cancer Europe), Paul Sommerfeld (TB Europe Coalition), Hall Skaara (PHAEUROPE), Marcia Podesta (EFA), Frank Willersin (Alpha-1 Europe Alliance)
From left to right: Susanna Palkonen (EFA Director), Daniele Pesaresi (Chiesi), Mary Ruth Brehmer (Sanofi-Regeneron Alliance), Andrea Forgione, HSBA (Menarini Group), Gaëlle Tournade (GSK), Aurore SERRAL, PhD (OM Pharma), Susanne Brandl (Roche), Rose Brade (AstraZeneca), Marcia Podesta (EFA President), Liina Haldna (MSD)
With full hearts, we closed the first training session of the European Respiratory Patient Academy as a stronger community. Over four days, we learned as much from one another as from the programme. We strengthened our advocacy, leadership and communication skills. We also practiced using evidence and engaging stakeholders while keeping the respiratory patient voice front and centre. Survey feedback showed real knowledge gains and practical tools for national work. As our President Marcia Podestà reminded us, this is what a united respiratory patient movement in Europe can look like.
Read the full report of the first training.
EFA sincerely thanks our Sustainable Corporate Partners for their support for this project: AstraZeneca, GSK, Sanofi-Regeneron Alliance, OM Pharma, Chiesi Group, Boehringer Ingelheim, MSD Roche, Menarini Group