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) and Tuberculosis Coalition Europe (TBEC) — 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.
Through the Academy, we provide and 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.
How to participate
The next training will take place in November 2025 in Prague. Participation is open only to members of the Steering Committee patient organisations. If you are an EFA member, you can submit your application through this form.
For general enquiries about the Academy, contact:
[1] Including asthma, COPD, lung cancer, bronchiectasis, cystic fibrosis, pulmonary hypertension, idiopathic pulmonary fibrosis, tuberculosis and alpha-1 antitrypsin deficiency.