Context: training respiratory patient advocates to shape better healthcare, research, and policy
Delayed diagnoses, unequal access to care, limited treatment options, and fragmented healthcare systems: across Europe, people living with respiratory diseases[1] face challenges that go far beyond physical symptoms.
Respiratory patient representatives and organisations play a vital role in addressing these challenges. They raise awareness, engage with researchers, shape policy agendas and work to improve care at national and European levels. Their work is essential to achieving lasting, systemic policy change.
However, effective advocacy requires strategic frameworks, knowledge and skills to drive impactful change. Strengthening the capacity of patient advocates is key to ensure patients' voices are heard in healthcare discussions and policy-making processes.
What is the European Respiratory Patient Academy?
Led by EFA and co-developed with a Steering Committee of European patient organisations — Alpha-1 Europe Alliance, Cystic Fibrosis Europe (CF-E), European Pulmonary Fibrosis Federation (EU-PFF), Pulmonary Hypertension Association Europe (PHA-E), Tuberculosis Coalition Europe (TBEC) and Lung Cancer Europe (LuCE), the European Respiratory Patient Academy is a project developed with and for the respiratory patient community to strengthen patient advocacy across respiratory diseases. It is an investment in a growing, cross-border movement led by and for patients, to build sustainable advocacy leadership within the respiratory community.
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)
Through the Academy, we provide high-quality education that strengthens the knowledge and capacity of patient advocates from across Europe to effectively represent patients and influence decision-makers. We encourage collaboration across disease areas and foster a unified community of respiratory advocates ready to shape better healthcare, research, and policy.
The programme
The Academy offers immersive, in-person training sessions for patient representatives from across Europe, supported by a preparatory series of online webinars. It is a space for respiratory advocates to learn, grow, and drive change together.
Delivered with the support of Patvocates, a consultancy specialised in patient advocacy, and co-designed by the Steering Committee, the programme includes interactive workshops and expert-led sessions on:
- The role of patients in shaping research
- Navigating healthcare systems and engaging stakeholders
- Advocacy strategy and influencing political processes
- Scientific literacy and interpreting evidence
- Organisational sustainability and resilience
- Tackling inequities in access to care
- Strategic communication and leading change
The programme integrates also the Diversity, Equity and Inclusion (DEI) principles, to reflect the lived realities and diverse needs of respiratory patients and advocates across Europe.
2025 training at a glance (Prague, 13-16 November)
- 4 days, 12 sessions, 70 participants total (including 42 trainees from 23 countries)
- Cross-disease cohort representing 9 respiratory areas
- 21% average learning increase across streams
- 96% felt better prepared and more confident in their advocacy role
- 100% rated the content positively; 80% gave the highest rating
Key outcomes
Participants strengthened advocacy, leadership and communication skills, and practiced using evidence and stakeholder engagement while keeping the patient voice central. Teams set objectives, mapped stakeholders and drafted plans to take home.
- Advocacy capacity strengthened: clearer goals, stronger cases, smarter coalitions.
- Research and data literacy strengthened: reading studies, assessing methods, using numbers with care while keeping the patient voice central.
- Understanding of systems, policy and access strengthened: where decisions happen, who shapes them, why value matters.
- Leadership, communication and governance strengthened: transparent processes, accountability and long-term sustainability for patient organisations.
“Your lived experience isn’t just valuable; it is essential to shaping better research, care and policy across Europe.”
— Marcia Podestà, EFA President and Chair of the Steering Committee
Testimonies from trainees
“Interactive and engaging workshops, plus learning from different countries’ experiences.” — Clare Donohoe, EU-PFF
“A healthy mix of theory and practice—and exercises to understand barriers across diseases.” — Yuliia Kalancha, TB Europe
“Strategy planning matters. Break big goals into tasks and involve the right people—practical tools I’ll use.” — Kari Dakota Aasheim, Alpha-1 Europe
“Evidence-based advocacy is essential if we want real change.” — Claire McQuade, EFA
How to participate
The first training took place in Prague, 13–16 November 2025. Future editions will be announced via EFA and the Steering Committee channels.
For general enquiries about the Academy, contact:
Acknowledgements
EFA sincerely thanks our Sustainable Corporate Partners for their support for this project:
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[1] Including asthma, COPD, respiratory allergies, lung cancer, bronchiectasis, cystic fibrosis, pulmonary hypertension, idiopathic pulmonary fibrosis, tuberculosis and alpha-1 antitrypsin deficiency.