On 8–9 June 2026, the ERN RARE-LIVER Alpha-1 Antitrypsin Deficiency (AATD) Working Group convened in Lyon, France, for a dedicated workshop focused on developing paediatric guidelines for Alpha-1-related liver disease.
The two-day meeting brought together leading specialists from across Europe to address an important gap in the management of paediatric AATD. The primary objective was to draft a guidance paper covering the diagnosis, treatment, and long-term follow-up of infant and adolescent patients living with the liver-related manifestations of AATD.
Representing the Alpha-1 Europe Alliance (A1EA), Frank Willersinn participated in the workshop alongside 12 paediatric hepatology experts and patient advocates from Germany, France, Italy, Portugal, Denmark, Poland, and the United Kingdom.
The collaborative nature of the meeting reflects the growing commitment within the rare liver disease community to address the specific challenges faced by children with AATD.
The workshop was led by internationally recognized experts in Alpha-1 liver disease, including Dr. Mathias Ruiz from Hospices Civils (CHU) Lyon, France, and Dr. Pavel Strnad from University Lausitz, Germany. Both are members of the ERN (European Reference Network) RARE-LIVER Alpha-1 Working Group leadership team, while Dr. Strnad also serves on the Scientific Advisory Board of the Alpha-1 Europe Alliance.
By the conclusion of the workshop, participants had successfully completed a draft guidance document. The draft will now be circulated among additional Alpha-1 experts and professional societies, including representatives from EASL – European Association for the Study of Liver and ESPGHAN – European Society for Paediatric Gastroenterology Hepatology and Nutrition, for review and feedback before finalization.
The group hopes to publish an official guidance paper by the end of 2026, providing healthcare professionals with a valuable resource to support the diagnosis, management, and long-term care of children with Alpha-1 liver disease.
The workshop was co-organized by ERN RARE-LIVER in collaboration with ESPGHAN and FILFOIE, the French Network for Liver Diseases.
This initiative is aligned with the Alpha-1 Europe Alliance’s core priorities and represents an important step forward for the Alpha-1 community in Europe. The development of dedicated paediatric guidance demonstrates the increasing recognition of AATD within Europe’s rare liver disease networks and reinforces the importance of ensuring that children and families affected by Alpha-1 receive timely diagnosis, expert care, and consistent follow-up throughout their healthcare journey.
