Youth Panel Voices at EASL 2026
EASL is the home of hepatology, where innovation and healthcare come together. The EASL Congress brings together doctors, scientists, allied health professionals, industry partners, and patients to exchange knowledge, showcase breakthroughs, and build meaningful connections. Throughout the four-day congress, we advocated for the specific needs of young people living with rare liver disease. We delivered a presentation on improving communication between young patients and healthcare professionals. During our talk, we highlighted the challenges young patients face when navigating the healthcare system and emphasized the importance of truly patient-centred care. Our key message was simple: take our concerns seriously.
Following the presentation, we joined a panel discussion with Dr. Ruth De Bruyne, Dr. João Madaleno, and Wiebke Papenthin on how communication barriers in clinical practice can be overcome. The session sparked significant interest, and we received many questions from the audience both during and after the discussion. Due to this positive response, we decided to repeat the presentation and discussion in an ERN webinar at the end of 2026. Our contribution to the congress extended beyond this session. ERN RARE-LIVER Youth Panel Coordinator Janne Suykens presented a poster highlighting young patients’ perspectives on Joint Consultations. We also attended numerous talks and presentations on topics such as mental health, patient advocacy and pregnancy in liver disease.
Most importantly, we had the opportunity to meet many people who support our mission of strengthening the voice of young patients. We were also introduced to a scientific and clinical community that strives to better understand the realities faced by the people it aims to help. Participating in such a major congress was both an honour and a valuable opportunity to make a difference by amplifying the patient voice. While we are patients, we are also people with everyday challenges, ambitions, successes, and setbacks. These aspects of our lives should be recognised by those who care for us and oversee our treatment. We want to be heard, understood, and cared for as individuals, not just as diagnoses.
By participating in the EASL Congress, we have helped write a new chapter in patient involvement. We hope to make a positive difference for everyone facing the emotional challenges that often accompany a rare or chronic disease and for those learning to live with their condition.
A special thank you to ERN RARE-LIVER for making this opportunity possible and for believing in the importance of the patient voice. We would also like to thank Kari and Janne for their dedication to ensuring that the Youth Panel is increasingly heard. Finally, we are grateful to Ruth, João and Wiebke for joining us in the discussion and to the entire Youth Panel for their valuable contributions and support.