ERN RARE-LIVER at the EASL Congress 2026 in Barcelona
ERN RARE-LIVER took part in the EASL Congress 2026 in Barcelona from 26–29 May. Throughout the congress, the ERN RARE-LIVER booth provided an opportunity to meet with members, partners and colleagues from across the network. We were pleased to connect with many familiar faces as well as new contacts and to exchange ideas on ongoing and future activities.
A key session during the congress was the ERN RARE-LIVER Track Hub session “(How To) Talk With Us”. The session included a panel discussion between members of the ERN RARE-LIVER Youth Panel represented by Alanis Roth and Lara Portugal, ERN RARE-LIVER ePAGs represented by Patient Representatives Lead Wiebke Papenthin, adult hepatologist João Madaleno (Coimbra University Hospital Centre) and paediatric hepatologist Ruth De Bruyne (Ghent University Hospital).
The discussion focused on communication between healthcare professionals, patients and young people living with rare liver diseases. The Panelists shared their experiences and perspectives, highlighting the importance of involving patients and families in conversations about care and decision-making.
The congress also featured the EASL Patient Roundtable Discussion, “Putting Patients First – From Research to Treatment”. Martine Brown, Patient Management Board Representative, participated in the discussion alongside representatives from clinical research, nursing, ELPA and other stakeholder groups. The session explored how patient perspectives can be better integrated into clinical research, from study design and recruitment to treatment development and clinical care.
On Thursday evening our members and partners joined our annual EASL ERN RARE-LIVER Reception. The event provided a relaxed setting for networking, catching up with colleagues, discussing joint projects and exchanging ideas. The evening concluded with a short address by ERN RARE-LIVER Coordinator Ansgar Lohse and an invitation to continue the conversation at the next ERN RARE-LIVER Reception during the EASL Congress 2027 in London.
We would like to thank everyone who visited our booth, took part in the discussions and joined the reception. EASL 2026 once again provided an important opportunity to bring together healthcare professionals, researchers, patients and patient representatives from across Europe and beyond.