The retrospective multicentre Amanita-PEX study examined outcomes and the role of therapeutic plasma exchange in children with amatoxin-associated acute liver failure.

This ERN RARE-LIVER Live Case Discussion on 24 November 2026 at 15:00 (CET) will be held in collaboration with the ERN RARE-LIVER CPMS Helpdesk and experts from ERN RARE-LIVER member centres.

Every member of the rare disease community has a unique story to tell. This international competition invites people from around the world to share their perspective through the power of photography.

The ERN RARE-LIVER Clinical Exchange Programme offers clinicians and healthcare professionals the opportunity to gain experience and share knowledge across member and partner centres, fostering collaboration and improving care for patients with rare liver diseases.

A study links obesity and diabetes to worse liver outcomes in adults with Pi*ZZ alpha-1 antitrypsin deficiency, highlighting the combined impact of genetic and metabolic risk factors.

A study across all 24 ERNs identifies gaps in emergency preparedness and proposes a 10-point plan to maintain rare disease care during crises.

ERN RARE-LIVER has developed a European framework for patient-centred pathways, translating clinical recommendations and patient priorities into coordinated care.

People living with Autoimmune Hepatitis (AIH) are invited to participate in the study "AIH: Your Experiences with Treatment and Care". The online questionnaire aims to better understand patients’ experiences and perspectives on their treatment and care.

This ERN RARE-LIVER Webinar on 03 November 2026 at 5:30PM (CET) will be a webinar from the Autoimmune Hepatitis Working group and the University Medical Centre Hamburg-Eppendorf.

The ERN RARE-LIVER Youth Panel brings together young people living with rare liver diseases to help shape the network’s work. Their new newsletter offers a window into their perspectives, priorities and activities.

The ERN RARE-LIVER ACADEMY is held annually and hosted by an ERN RARE-LIVER member centre, bringing together young fellows from across Europe to deepen their knowledge of rare liver diseases.

The ERN RARE-LIVER Clinical Exchange Programme offers clinicians and healthcare professionals the opportunity to gain experience and share knowledge across member and partner centres, fostering collaboration and improving care for patients with rare liver diseases.

This ERN RARE-LIVER Webinar on 17 November 2026 at 5pm (CET) will be a webinar from the ERN RARE-LIVER Alveolar Echinococcosis Group.

Twenty-seven-year-old Silas Thing Sørensen is one of approximately 24 people in Denmark on the waiting list for a liver transplant. While Silas Waits follows him through a period in which an extraordinary situation has become part of ordinary life.

The ERN RARE-LIVER Clinical Exchange Programme offers clinicians and healthcare professionals the opportunity to gain experience and share knowledge across member and partner centres, fostering collaboration and improving care for patients with rare liver diseases.

At the EASL Congress 2026 in Barcelona, members of the ERN RARE-LIVER Youth Panel shared their perspectives on the needs of young people living with rare liver diseases, highlighting the importance of patient-centred care and effective communication between patients and healthcare professionals.

ERN RARE-LIVER took part in the EASL Congress 2026 in Barcelona, meeting with members and partners at its booth and contributing to several programme sessions. Highlights included discussions on patient involvement in research and care, as well as the ERN RARE-LIVER Reception.

The ERN RARE-LIVER Clinical Exchange Programme offers clinicians and healthcare professionals the opportunity to gain experience and share knowledge across member and partner centres, fostering collaboration and improving care for patients with rare liver diseases.

On 27 and 28 February, ERN RARE‑LIVER coordinated the first ERN overarching workshop on Healthcare Transition in Rare Diseases in Ghent. The event brought together young patient representatives and healthcare providers from 22 ERNs to address the need for safe, structured and person‑centred transition from paediatric to adult care.

Can we diagnose paediatric autoimmune liver disease faster and more reliably? A new European multicentre study specifically addresses this question.

The ERN RARE-LIVER Clinical Exchange Programme offers clinicians and healthcare professionals the opportunity to gain experience and share knowledge across member and partner centres, fostering collaboration and improving care for patients with rare liver diseases.

The ERN RARE-LIVER Clinical Exchange Programme offers clinicians and healthcare professionals the opportunity to gain experience and share knowledge across member and partner centres, fostering collaboration and improving care for patients with rare liver diseases.

A new 2025 EASL guideline outlines expert recommendations for the diagnosis and management of major vascular liver diseases, emphasising early detection, stepwise treatment strategies, and multidisciplinary care.

A new ERN RARE-LIVER position paper presents expert consensus on the use of somatostatin analogues in the management of polycystic liver disease.

The ERN RARE-LIVER Clinical Exchange Programme offers clinicians and healthcare professionals the opportunity to gain experience and share knowledge across member and partner centres, fostering collaboration and improving care for patients with rare liver diseases.

A multicentre study analyzed patients with amatoxin-induced acute liver failure from 25 centers between 2013 and 2024, comparing therapeutic plasma exchange with standard-of-care treatment.

Real-world data from the ERN RARE LIVER registry highlight current practices in PBC management and reveal opportunities to optimise care for higher-risk patients.

The ERN RARE-LIVER Clinical Exchange Programme offers clinicians and healthcare professionals the opportunity to gain experience and share knowledge across member and partner centres, fostering collaboration and improving care for patients with rare liver diseases.

The ERN RARE-LIVER Clinical Exchange Programme offers clinicians and healthcare professionals the opportunity to gain experience and share knowledge across member and partner centres, fostering collaboration and improving care for patients with rare liver diseases.

The ERN RARE-LIVER Clinical Exchange Programme offers clinicians and healthcare professionals the opportunity to gain experience and share knowledge across member and partner centres, fostering collaboration and improving care for patients with rare liver diseases.

The ERN RARE-LIVER Clinical Exchange Programme offers clinicians and healthcare professionals the opportunity to gain experience and share knowledge across member and partner centres, fostering collaboration and improving care for patients with rare liver diseases.

This ERN RARE-LIVER template aims to improve the communication and information transfer from paediatric services to the adult department, facilitating a smoother transition of care for patients.

In order to ensure transparency within the actions of ERN RARE-LIVER, we disclose possible conflicts of interest of our members and partners.

PortoSinusoidal Vascular Disorder: Risk stratification & Therapeutic Approaches (RiTA)