The Alpha-1 Europe Alliance marks a key milestone with the launch of its Scientific Advisory Board (SAB), marking an important milestone in strengthening scientific collaboration and ensuring that the patient voice remains at the centre of advances in Alpha-1 Antitrypsin Deficiency (AATD).
The Scientific Advisory Board held its inaugural kick-off meeting in May 2026, bringing together ten internationally recognised clinicians and researchers from across Europe. The Board’s expertise spans the full spectrum of Alpha-1 Antitrypsin Deficiency (AATD), including lung, liver, and skin manifestations, as well as adult and paediatric care and translational research.
Summary of emerging priorities
The meeting also provided an opportunity to exchange ideas and discuss shared challenges and emerging priorities in the field. As a result of these discussions, the following key areas were identified to guide the research agenda:
- Earlier diagnosis and improved screening strategies.
- Development of better prognostic tools and biomarkers.
- Stronger European clinical trial networks.
- Advancing future therapies beyond plasma-derived treatment.
- Enhancing collaboration and disease registries.
- Promoting an integrated liver–lung approach to care.
- Ensuring future access to innovative therapies.
- Increasing awareness and implementation in clinical practice.
- Strengthening patient communication and patient-centred approaches
Advancing a shared vision for improved outcomes in Alpha-1 care
The creation of the Board reflects the Alliance’s commitment to advancing its vision: all people living with Alpha-1 in Europe can experience a better and longer life through a holistic approach to care, access to the best available treatments, and ultimately a cure.
The Scientific Advisory Board serves as an independent panel of expert clinicians and researchers who provide scientific guidance to the Alliance, help validate advocacy positions, and support policy initiatives aimed at improving the lives of people living with Alpha-1. In addition, the Board advises the Alliance on key medical and research questions and helps strengthen the representation of patient perspectives within scientific, clinical, and policy discussions across Europe.
“The Alliance warmly welcomes all members of the Scientific Advisory Board and looks forward to working together to advance research, improve care, strengthen advocacy efforts, and amplify the voices of people living with Alpha-1 across Europe”
A multidisciplinary group of experts
The Board includes leading specialists from seven European countries in lung, liver, and skin research:
- Prof. Joanna Chorostowska (Poland)
- Prof. Stephanie Everaerts (Belgium)
- Dr. Ilaria Ferrarotti (Italy)
- Prof. Sabina Janciauskiene (Germany)
- Dr. David Katzer (Germany)
- Dr. Beatriz Martinez Delgado (Spain)
- Prof. David Parr (United Kingdom)
- Prof. Pavel Strnad (Germany)
- Dr. Maria Torres (Spain)
- Prof. Jef Verbeek (Belgium)
By bringing together expertise from different medical specialties and research fields, the Board will help ensure that the Alliance addresses the diverse needs of people living with Alpha-1 throughout their lives.
Strengthening collaboration between patients and experts
Since its incorporation as a Belgian non-profit association in 2023, the Alpha-1 Europe Alliance has grown into a network of national patient organisations representing Alpha-1 communities in 14 European countries. The establishment of the Scientific Advisory Board further strengthens collaboration between patient advocates and the scientific community, supporting evidence-based advocacy, informed policy engagement, increased awareness, and better healthcare outcomes for people affected by AATD.
