News
More NewsERN RARE-LIVER CPMS Live Case Discussion: PSVD or Something Else?
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.
Autoimmune Hepatitis - Your Experiences with Treatment and 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.
Your shot. Your story. The EURORDIS Photo Award 2027 is Here!
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.
"What’s the Scoop?" - First ERN RARE-LIVER Youth Panel Newsletter
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.
ERN RARE-LIVER Clinical Exchange Programme: Reports from Barcelona II
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.
Scientific News
More Scientific NewsTherapeutic plasma exchange in Amatoxin-associated paediatric acute liver failure—results from the Amanita-PEX study
The retrospective multicentre Amanita-PEX study examined outcomes and the role of therapeutic plasma exchange in children with amatoxin-associated acute liver failure.
Publication: Amplification of genetic and metabolic factors in Alpha-1 Antitrypsin Deficiency
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.
Patient pathways for rare liver diseases: a European template developed by ERN RARE-LIVER
ERN RARE-LIVER has developed a European framework for patient-centred pathways, translating clinical recommendations and patient priorities into coordinated care.
Crisis Readiness for Rare Disease Populations: Lessons from the European Reference Networks
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 Position Paper: Medical Management of Polycystic Liver Disease
A new ERN RARE-LIVER position paper presents expert consensus on the use of somatostatin analogues in the management of polycystic liver disease.
EASL Clinical Practice Guidelines on vascular diseases of the liver
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.