The European Alpha-1 community is coming together through a new initiative supported by the European Lung Foundation (ELF), European Alpha-1 Research Collaboration (EARCO), Alpha-1 Europe Alliance, Alpha-1 UK and Alpha1 Deutschland e.V. The initiative aims to strengthen awareness, research, diagnosis and care for people living with Alpha-1 Antitrypsin Deficiency (AATD) across Europe.
At the centre of this collaboration is the launch of the European Alpha-1 Patient Advisory Group (PAG), created to raise awareness of AATD and support improvements in diagnosis, treatment and care for people living with the condition. The group brings together patients and patient representatives with the shared goal of ensuring that the experiences and perspectives of people living with Alpha-1, as well as those of family members and carers, are better reflected in European research, education, healthcare and patient-led initiatives.
The ELF Alpha-1 PAG will work closely with EARCO, a pan-European network dedicated to advancing clinical research and education in AATD. Through this partnership, the group will help strengthen patient involvement in research, support awareness-raising efforts across Europe, and contribute to ongoing improvements in diagnosis, treatment and standards of care.
"As research and innovation in AATD continue to advance across Europe, it is essential that people living with the condition are actively involved in shaping priorities, projects and outcomes. The launch of the European Alpha-1 Patient Advisory Group is an important step towards ensuring that research, education and care are informed by the real experiences and needs of our community."
The Alpha-1 Europe Alliance is pleased to support this initiative alongside national patient organisations including Alpha-1 UK and Alpha–1 Deutschland e.V., recognising the importance of coordinated European action to strengthen patient representation and ensure that the patient voice remains central to future developments in Alpha-1 research and care.
"Working together at European level gives us an important opportunity to strengthen the voice of the Alpha-1 community and contribute to better care and research collaboration across countries."
Join the European Alpha-1 Patient Advisory Group
The Alpha-1 Patient Advisory Groups is open to people across Europe living with AATD, as well as family members and carers. The groups provide a platform to share lived experience, highlight needs and priorities, and contribute to activities such as research collaborations, patient information development, awareness-raising and patient-led initiatives.
Participation is flexible and designed to accommodate different levels of involvement. Members may contribute occasionally by email or take part in online meetings and project discussions, depending on their availability, interests and health circumstances.
The Alliance welcomes this initiative as an important opportunity to strengthen collaboration between patients, healthcare professionals, researchers and advocacy organisations across Europe, ensuring that patient experience remains at the heart of progress in Alpha-1 care and research.
Those interested in joining the European Alpha-1 Patient Advisory Group or learning more about the initiative can visit the European Lung Foundation website or contact Elisa Jones at elisa.jones@europeanlung.org.
