An upcoming patient webinar will bring together people living with alpha-1 antitrypsin deficiency (AATD), researchers and patient advocates to discuss how lived experience can help shape the future of research, care and support.
The patient webinar will explore the role of the European Alpha-1 Research Collaboration (EARCO) registry, the value of patient participation in research and opportunities to get involved through patient organisations and the new European Lung Foundation (ELF) Alpha-1 Patient Advisory Group (PAG).
Ahead of the webinar, we spoke to Marion Wilkens and Karen O’Hara about their experiences of living with alpha-1, the importance of patient involvement and what they hope attendees will take away from the event.
Marion Wilkens lives with alpha-1 and is Chair of Alpha1 Deutschland, a member of the EARCO Steering Committee and a member of the ELF Alpha-1 Patient Advisory Group (PAG). Through her advocacy work, Marion helps strengthen the patient voice in alpha-1 research, care and awareness activities across Europe. During the webinar, she will discuss how people can get involved in the alpha-1 community through patient organisations, research initiatives and the new ELF Alpha-1 PAG.
I am looking forward to sharing what we have learned from the EARCO registry and explaining why patients’ contributions are so important. More than 5,000 patients have contributed their data, and I believe they should have the opportunity to learn how that information is being used and what researchers are learning.
For me, this is also about building trust. Patients should not only be asked to contribute data, they should be kept informed about what their contribution makes possible.
Patient involvement brings a different perspective to research, education and care. Patients can help highlight the challenges they face in everyday life, identify practical barriers and ensure that research focuses on questions that matter most to people living with alpha-1.
For me, involving patients in research starts with a very simple question: Is this research relevant to people living with alpha-1 and could it make a meaningful difference to their lives? I also look at whether study designs and procedures are realistic and manageable for patients. For example, are the visits, assessments and time commitments feasible for someone living with a long-term lung or liver condition? Are we asking the right questions, and are we measuring outcomes that really matter to patients?
Research and healthcare are strongest when scientific expertise and lived experience come together.
The webinar is an opportunity to learn more about EARCO, understand why the registry is important and discover how patient involvement can help improve understanding of alpha-1.
The new ELF Alpha-1 PAG offers a chance for people to share their experiences and help ensure that the patient perspective is included in research, education and advocacy across Europe. We need patients who contribute to research and patients who use their voice to help shape future priorities.
Your contribution matters and your voice matters. Whether you take part in research, contribute to a registry or share your experiences through a patient organisation, you can help shape a better future for people living with alpha-1.
At the same time, researchers and organisations have a responsibility to communicate openly, share what they learn and show patients how their contributions are making a difference.
We do not have to be experts in everything, but we are experts in our own experiences, and those experiences can make a real difference.
Karen O’Hara is Chair of Alpha-1 UK, a Board member of the Alpha-1 Europe Alliance and a member of the EARCO Steering Committee. Through her work across patient organisations and research initiatives, Karen advocates for greater collaboration between patients, healthcare professionals and researchers to improve outcomes for people affected by alpha-1. As co-chair of the webinar, Karen will help guide discussions on the latest developments in alpha-1 research and support audience engagement during the live Q&A session.
Sharing the successes of EARCO with patients and demonstrating how important their participation has been. Their voices helped shape research priorities from the beginning, and their registry data has helped researchers learn more about how alpha-1 affects patients.
EARCO has put the European AATD community on the international map contributing significantly to alpha-1 research and knowledge. Something I believe we should all be very proud of.
There is still so much to learn about alpha-1 and EARCO listens to the voice of the patients and their needs. The data EARCO is now collecting from follow-up visits is incredibly important in helping us understand how alpha-1 affects people over time.
The ELF PAG provides a forum where patients can discuss their ideas and become actively involved in shaping the future of alpha-1 research and advocacy in their own countries and across Europe.
Patient involvement has changed significantly since I first became involved as an advocate. It is no longer a tick-box exercise and patient voices are now recognised as an essential part of many organisations and initiatives.
EARCO welcomed patients from the beginning and I believe patients and clinicians working together means we all learn from each other creating greater outcomes.
It is an incredibly exciting time for the alpha-1community. There are many clinical trials in the pipeline giving hope that therapies may eventually be available, particularly for people living in countries where treatment options have historically been limited.
Ultimately, there is hope that a cure is on the horizon that may halt disease progression.
Your voice matters and your experiences are important. Consider joining the EARCO registry and get involved with your national patient organisation. Whether through research, advocacy or peer support, your involvement can help shape the future for people living with alpha-1.
The 2026 patient webinar on alpha-1 will take place online via Zoom on 4 November.
The event is free to attend and is open to patients, carers, healthcare professionals, researchers and anyone interested in learning more about alpha-1 and its impact on lung health.
Join us to hear the latest updates from the EARCO registry, learn how patient voices are helping to shape alpha-1 research and care, and discover opportunities to get involved through patient organisations and the ELF Alpha-1 Patient Advisory Group.
The webinar will be held in English. A live transcription service will enable participants to generate captions in more than 60 languages.
