Marion Wilkens
Marion Wilkens, as appeared in Alpha1 Journal 2/2025.
The journey to Amsterdam began on September 23rd, and I returned late in the evening on October 1st. No, the ERS congress itself didn't last that many days – rather, I used the time around the congress to make new contacts and strengthen existing ones.
During the first few days, Alpha1 Germany, represented by myself, was invited by GAAPP to the Alpha-1 Lung & Liver workshop and the members' meeting. Since mid-2025, we have been an official GAAPP member, which opens up new international opportunities for us. GAAPP stands for Global Allergy & Airways Patient Platform – a worldwide non-profit umbrella organization that supports and represents the interests of patients with allergies, respiratory diseases, and atopic conditions. It connects patient organizations globally, raises awareness of these diseases, promotes education and research, and advocates for better care and a stronger voice in health and policy processes for those affected.
Insights from the workshop
- Establishment of a mentoring program: Experienced patient organizations should support those who need help with setting up or with specific projects.
- Call for an integrated Alpha-1 care policy: The group of lung and liver organizations recognized the need for a joint policy statement on integrated care and best-practice models. A holistic approach is essential for the best possible treatment.
- Desire for a coalition of lung, liver and rare disease organizations: This should further strengthen cooperation.
Ideas for joint awareness campaigns (lungs & liver) emerged on the sidelines of the meeting. The exchange with international organizations was extremely enriching for us. It often became clear how creatively other countries deal with the challenges – and how much we can learn from each other.
The first day was already full of new impressions – and so it was to continue…
Findings froms dem Workshop
The meeting with over 100 participants was impressive. We were particularly struck by GAAPP's development into a large and influential organization within just a few years. Equally moving was the open, emotional atmosphere: members gratefully shared their successes, collaborations, and mutual support.
This more American-influenced event was followed by a European highlight:
ELF Patient Organization Networking Day
The Networking Day allows members of the ELF network to exchange ideas, network, and discuss current challenges in respiratory health. The 2025 event was themed: "Improving Respiratory Health – Think Globally, Act Locally."„
Public interest in science is changing: misinformation spreads rapidly, but digital platforms also offer tremendous opportunities for sound, evidence-based information. In 2025, the respiratory community will face major challenges such as climate change, pandemic preparedness, shifting political priorities, healthcare inequalities, and declining research investment.
But this very fact also presents opportunities for greater innovation and, as patient organizations, for stronger participation. This event significantly strengthened our European sense of "we." The shift within the medical profession was particularly noticeable: Professor Joanna Chorostowska-Wynimko, President of the ERS, spoke clearly in favor of greater patient involvement – in research, care, and policy. A particularly moving moment was when, after her speech, she came directly to us Alphas to pledge her support.
Impressions from the ERS Congress
The official opening on Saturday evening kicked off days packed with information, lectures, and meetings. Most days began early with poster sessions – guided tours where researchers presented their findings. This year, there were more Alpha-1 posters than ever before. The fact that we couldn't attend all the presentations is a positive sign: Alpha-1 is no longer a fringe topic in pulmonology. A personal highlight was our meeting with EARCO – the European Alpha-1 Consortium. Following this, we were invited to participate in planning an Alpha-1 conference for 2026 and were able to contribute our patient perspective. For the first time in Amsterdam, we, as patient experts, were granted access to all areas of the congress – a strong signal for greater collaboration.
Together on the road for Alpha-1
Whether together with Dr. Frank Willersinn on behalf of the Alpha-1 Europe Alliance or as a representative of Alpha1 Germany – we were able to initiate many new projects, including an exciting project with VisionHealth (Kata® app), which we will present at our information day in Bad Wildungen.
Good conversations, a growing network and continuous presence – that's what makes Alpha1 Germany stand out and contributes to us being perceived as a strong patient organization.
