The Alpha-1 PAG is a new group and its main focus in the early stages is to bring together members who can decide on its priorities and what to work on.

Members are encouraged to share their experiences of living with AATD, or supporting someone with the condition. These perspectives will directly guide the group’s direction and future activities.

The first meeting is planned for July 2026. New members will continue to be welcomed as the group develops.

The European Alpha-1 Research Collaboration (EARCO) is a European Respiratory Society (ERS) Clinical Research Collaboration (CRC) for AATD.

EARCO aims to improve early diagnosis and understanding of AATD across Europe. A key part of this work is ensuring reflects real life and real patient needs.

By working with the Alpha-1 PAG, people with lived experience of alpha-1 will help shape research priorities and inform study design to ensures research remains relevant to patients.

The Alpha‑1 PAG will support the review and development of patient education materials and new resources. This ongoing work ensure that ELF materials are practical and relevant for people living with AATD, while also highlighting gaps in resources and information for all.