Latest News

ERN RARE-LIVER CPMS Live Case Discussion: PSVD or Something Else? A Diagnostic Dilemma in a 17-Year-Old with Fluctuating ALT and Vascular Changes

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.

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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.

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Reports from Barcelona: ERN RARE-LIVER Clinical Exchange Programme

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.

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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.

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"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.

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ERN RARE-LIVER Clinical Exchange Programme: Reports from Monza

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.

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While Silas Waits

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.

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ERN RARE-LIVER Clinical Exchange Programme: Reports from Groningen

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.

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Youth Panel Voices at EASL 2026

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.

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ERN RARE-LIVER at the EASL Congress 2026 in Barcelona

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.

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ERN RARE-LIVER Clinical Exchange Programme: Reports from Aarhus

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.

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Transition in Rare Diseases – Successful ERN Workshop in Ghent

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.

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ERN RARE-LIVER Clinical Exchange Programme: Reports from London

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.

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ERN RARE-LIVER Clinical Exchange Programme: Reports from Paris

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.

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ERN RARE-LIVER Clinical Exchange Programme: Reports from Aachen

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.

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ERN RARE-LIVER Clinical Exchange Programme: Reports from Birmingham

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.

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ERN RARE-LIVER Clinical Exchange Programme: Reports from Barcelona

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.

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ERN RARE-LIVER Clinical Exchange Programme: Reports from Hamburg

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.

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ERN RARE-LIVER Clinical Exchange Programme: Reports from Leuven

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.

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ERN Transition of healthcare template

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.

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