Representatives of the Alpha-1 Europe Alliance took part in the Academy alongside more than 50 respiratory patient advocates from across the continent. Held from 13 to 16 November, the programme — co-created by the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) and patient organisations across Europe — marks an important milestone in developing stronger, more coordinated patient leadership.
The Alpha-1 community was represented by Frank Willersinn, MD (Alpha-1 Plus, Belgium), Knut Skaar and Kari Dakota Aasheim (Alfa-1 Norden, Norway), Maisy Sheldon (Alpha-1 UK, United Kingdom) and Ron Ewals (Longfonds, Netherlands). Their presence ensured that the needs and perspectives of people living with Alpha-1 Antitrypsin Deficiency (AATD) were reflected throughout the discussions.
Strengthening the patient voice in research, policy and care
The Academy brought together advocates working across a wide range of respiratory conditions, creating a unique space to learn, collaborate and build advocacy capacity. Over four days, participants explored how to deepen their impact in research, policy and healthcare pathways — with the shared goal of reducing inequalities and achieving better, more equitable care for patients.
For the Alpha-1 Europe Alliance, joining this inaugural cohort was an opportunity to amplify the visibility of Alpha-1 priorities within the wider respiratory community. The delegates actively engaged in group work, discussions and practical workshops, sharing their experiences and challenges while learning from colleagues facing similar issues in different disease areas.
“A challenge for many patient organisations is to get their message across, whether this is towards health authorities, experts, pharma, policymakers or new patient groups. The sessions we had on understanding the current landscape in Europe, spotting near-term opportunities, seeing where patient engagement shapes EU policy, understanding which trends are developing in the European respiratory landscape, and learning communication skills all contributed to raising the bar for us as individuals and as representatives of a patient organisation.”
Over the course of four days, participants were immersed in a wide range of topics, such as:
- Prevention and awareness campaigns
- Stigmatization of (lung) patients
- Access to care within Europe
- The role of the patient in research
- Understanding and influencing healthcare systems
“The days were long and intense. A lot of information was shared and we were often asked to work out cases. That is precisely what made it interesting because various patients, representatives of patient associations and pharmaceutical companies were present at the various tables. For me a great opportunity to broaden my knowledge, expand my network and especially the good conversation about how you deal with your illness and what problems you encounter.”
Why stronger patient advocacy matters
Across Europe, respiratory patients continue to encounter significant barriers affecting their health, wellbeing and quality of life. Delayed or missed diagnoses, unequal access to treatment, fragmented care pathways and a lack of coordinated support remain common challenges. These systemic issues highlight the importance of strong patient representation in policy discussions, research planning and healthcare decision-making.
However, effective advocacy requires more than motivation — it demands knowledge, strategy and the skills to influence complex systems. The European Respiratory Patient Academy was designed precisely to build these capabilities, supporting long-term advocacy efforts at national and European levels.
“Attending the Academy reinforced that inequities in diagnosis and treatment are solvable when clinical expertise, patient organisations and health systems work together. The most practical, high-impact lessons were to invest in targeted case-finding and primary-care education, build and share registries and referral networks, use digital tools thoughtfully to reach underserved areas, and push for coordinated policy engagement so effective therapies are reimbursed fairly.”
A collaborative initiative built with and for patients
The Academy is the result of a joint effort involving EFA and a Steering Committee of European patient organisations, including the Alpha-1 Europe Alliance, Cystic Fibrosis Europe (CF-Europe), the European Pulmonary Fibrosis Federation (EU-PFF), Pulmonary Hypertension Association Europe (PHA-Europe), Tuberculosis Coalition Europe (TB Europe) and Lung Cancer Europe (LuCE).
“For me it was a huge experience in communication and logistics. It took one year to elaborate the program, and the leadership people in the Steering Committee were fortunately guided and supported by the staff of EFA/EFANET.”
This collaborative model embodies the Academy’s vision: building a cross-disease, cross-border community of trained advocates working towards shared goals. The involvement of Alpha-1 organisations in this leadership structure demonstrates the Alliance’s commitment to collective action and its role in strengthening the wider respiratory movement.
“I can say that the enthusiasm of the attendees is pushing us, the Steering Committee, forward to run this kind of event again next year. If you get feedback from an attendee like ‘I have not at all lost my time in Prague,’ it shows the necessity of upskilling engaged patient representatives.”
Frank also highlights that the main steps in preparing the event included two webinars, mandatory for all attendees, to provide an initial introduction to advocacy in the respiratory field.
A milestone for the Alpha-1 community
Participation in the Academy underscores the Alpha-1 Europe Alliance’s commitment to strengthening patient advocacy across Europe. Working alongside other respiratory communities allows Alpha-1 advocates to contribute to shared initiatives, influence broader policy discussions and ensure that Alpha-1 remains visible and prioritised within European health agendas.
Empowering a stronger, more coordinated patient voice is essential to improving outcomes for people living with AATD and advancing the systemic changes needed in healthcare, research and policy.
