ERN RARE-LIVER

What ERN RARE-LIVER does

ERN Rare-Liver is the European Reference Network on Rare Hepatological Diseases, one of 24 European Reference Networks (ERNs) formally approved by the ERN Board of Member States and funded by the European Commission. The network coordinates care, research, and training for rare liver diseases across 52 full member centres, supplemented by 10 affiliated partners and 20 collaborative partners, operating across approximately 20 European countries. It is hosted by University Medical Centre Hamburg-Eppendorf in Hamburg, Germany, under the coordination of Professor Ansgar W. Lohse. The network serves three primary constituencies: patients with rare hepatological conditions, healthcare professionals (hepatologists, paediatric hepatologists, specialist nurses), and patient organisations; cross-border virtual consultations, standardised clinical guidelines, and patient advocacy are the principal modes of engagement.

Name

ERN RARE-LIVER

Legal name

University Medical Centre Hamburg-Eppendorf

Website

https://rare-liver.eu

Company type

Private

Operating status

Operating

Headcount range

1–10 employees

Short description

ERN Rare-Liver is a publicly-funded European Reference Network connecting 52 specialist centres across Europe to coordinate care, research, and training for rare hepatological diseases under European Commission mandate, hosted by University Medical Centre Hamburg-Eppendorf.

Ownership category

akta.pro rank

Product category

Healthcare Reference Network — Rare Hepatological Diseases

NAICS

All Other Professional, Scientific, and Technical Services (54199)

SIC

Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Hepatology & Liver Disease (HLAKAEAB)

akta.pro secondary industries

Transplant Hepatology (HLAKAEAK), Rare Gastroenterology & Hepatology Disorder Therapies (HLAIAIAL)

Keywords

• Rare liver diseases
• Hepatology reference network
• Virtual clinical consultations
• Patient disease registries
• Medical education training

Headquarters

HQ city

Hamburg

HQ country

Germany

HQ region

Europe

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

Personnel, Operations, Infrastructure, Marketing or Sales, Technology or R&D, Others

Revenue model

1. European Commission Funding: ERN Rare-Liver is funded by the European Commission as one of 24 European Reference Networks approved by the ERN Board of Member States. The network receives funding through EU programmes including the Connecting Europe Facility (CEF) for technical infrastructure and Joint Actions such as JARDIN for integration into national healthcare systems.

Go-to-market motion1 record

Distribution channels5 records

Marketing channels11 records

Core offering

ERN Rare-Liver is a European Reference Network that coordinates care for rare liver disease patients across 52 specialist centres in Europe. It delivers cross-border virtual consultations via the CPMS platform, multi-centre research collaboration through the R-LIVER Registry, standardised Patient Pathways, disease-specific clinical practice guidelines, and a structured training and education portfolio including the annual Academy, webinars, podcast, and Clinical Exchange Programme. Funding is provided by the European Commission and the network operates as permanent EU health infrastructure rather than a commercial enterprise.

Product overview

ERN RARE-LIVER is a European Reference Network (one of 24 approved by the ERN Board of Member States) focused on rare hepatological diseases, connecting 52 full member centres across Europe. It is not a single product company but a coordinated network offering a portfolio of clinical, educational, and research resources. Its core offerings include: the R-LIVER Registry (a pan-European patient data registry), the CPMS virtual consultation platform (built on the European Commission's Clinical Patient Management System), Patient Pathways (standardised care documents for NCPVT, PSVD, PLD, and AIH), and the RiTA research project on PSVD. Supporting these are educational products — the ERN Liver Podcast, ERN RARE-LIVER ACADEMY (annual training workshops), Webinars and Talks (on-demand on EASL Campus), Clinical Exchange Programme (cross-border fellowships), and Workshops. The network also supports transition of care through its Youth Panel and the EASL 2025 Toolkit for adult hepatologists. Funding is provided by the European Commission through the Connecting Europe Facility and related EU health programmes.

Differentiator

Problem solved

Functional benefit

Brands

• R-LIVER Registry: A registry for rare liver disease patients and healthcare professionals
• ERN Liver Podcast
• ERN RARE-LIVER ACADEMY
• CPMS
• ERN RARE-LIVER Workshops
• Clinical Exchange Programme

Products and services

• CPMS (Clinical Patient Management System) The European Commission's secure online platform enabling ERN RARE-LIVER members to hold virtual consultations for complex patient cases across borders. It is accessible to healthcare professionals at member centres for submitting and discussing complex rare liver disease cases.
• R-LIVER Registry A registry collecting and managing data on rare liver disease patients across Europe, accessible to both healthcare professionals and patients, supporting clinical research and patient monitoring.
• Patient Pathways Standardised care process documents produced by Disease Working Groups together with Specialist Nurses and Patient representatives. Available pathways cover Non-cirrhotic portal vein thrombosis (NCPVT), Porto-sinusoidal vascular disorder (PSVD), and Polycystic liver disease (PLD), with Autoimmune Hepatitis forthcoming, available in multiple language versions.
• RiTA Research Project (Porto-Sinusoidal Vascular Disease: Risk stratification & Therapeutic Approaches) A collaborative research project across five EU countries (France, Italy, Germany, Israel, Spain) investigating the natural history and progression of PSVD, developing prognostic scores, identifying patient-reported outcomes, mechanistic biomarkers, and therapeutic targets.
• ERN Liver Podcast A regular podcast series featuring conversations with experts, patients, and key stakeholders on rare liver diseases. Episodes are typically 15–20 minutes long, released regularly with different themes, and include an introduction, focused discussion, and closing segment.
• ERN RARE-LIVER Webinars and Talks An extensive library of on-demand educational talks and webinars on specialist disease-specific topics, primarily aimed at physicians and nurses, covering topics such as Budd-Chiari Syndrome, Wilson's disease, biliary atresia, PSC, AIH, vascular liver diseases, pregnancy in liver disease, and more, hosted on EASL Campus.
• ERN RARE-LIVER ACADEMY Annual intensive training workshops for young fellows and early-career clinicians on rare liver diseases, combining expert lectures, interactive case discussions, and group work. Academy 2023 was held in Barcelona, 2024 in Copenhagen on transition, 2025 in Heidelberg on guidelines-to-practice, and 2026 in Groningen on paediatric liver diseases, with 2027 in preparation.
• ERN RARE-LIVER Workshops ERN RARE-LIVER funds and organises disease working group workshops across Europe covering topics such as portopulmonary hypertension in children, biliary malformation consensus, Alpha1-antitrypsin guidelines, cytomegalovirus in biliary atresia, and rare liver diseases and pregnancy. A total budget of 40,000 EUR is available for workshops between January–June 2027, with expected 10,000 to 20,000 EUR per workshop.
• Clinical Exchange Programme A cross-border fellowship programme enabling clinicians and health professionals from ERN RARE-LIVER member or partner centres to visit other member centres for up to two weeks, fostering collaboration and knowledge exchange across Europe. Up to 10 exchanges are granted per funding period.
• Youth Panel A youth engagement group consisting of young people living with rare liver diseases who contribute to ERN RARE-LIVER activities, participate in congresses (EASL, ESPGHAN), and advocate for patient-centred care and improved communication with healthcare professionals.
• EASL 2025 — A Toolkit for Adult Hepatologists (Transition of Care) A structured toolkit for adult hepatologists managing the transition of paediatric liver patients to adult care, covering informational continuity, relational continuity, management continuity, and future planning.

Quantifiable outcome

• 92% of Wilson disease centres adhere to international guidelines and Leipzig criteria
• +3 more outcomes

Named customers11 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature2 records

Partnerships

Nine partnerships are on record, tiered core and minor.

• JARDIN Joint ActioncoreStrategic or Co-development PartnerJoint Action on Integration of ERNs into National Healthcare Systems. A pioneering 3-year EU project involving all member states plus Norway and Ukraine, aimed at improving accessibility of ERNs for patients across Europe. ERN Rare-Liver participates as one of the 24 European Reference Networks in this initiative.
• European Association for the Study of the Liver (EASL)coreStrategic or Co-development PartnerEASL aims to spread knowledge and expertise in best practices and scientific breakthroughs in Hepatology. ERN Rare-Liver collaborates on annual congresses, the EASL Campus platform for educational content, and joint clinical practice guidelines.
• European Society for Paediatric Gastroenterology Hepatology and Nutrition (ESPGHAN)coreStrategic or Co-development PartnerMulti-professional organisation promoting health of children with gastrointestinal, liver, and nutritional conditions. ERN Rare-Liver participates in ESPGHAN Annual Meetings with dedicated booths and paediatric-focused sessions.
• European Society of Human Genetics (ESHG)minorStrategic or Co-development PartnerNon-profit organisation promoting research in basic and applied human and medical genetics, with goals of ensuring high standards in clinical practice.
• European Rare Disease Research Coordination and Support Action (ERICA)coreStrategic or Co-development PartnerHorizon Europe project involving all 24 ERNs to build on individual ERN strengths and create an integrated platform for research and innovation capacity across European Reference Networks.
• Filière de santé des maladies rares du foie (FILFOIE)coreStrategic or Co-development PartnerFrench Network for rare liver disease in adults and children. ERN Rare-Liver collaborates with FILFOIE on national health network activities and knowledge exchange.
• Vascular Liver Disease Group (VALDIG)coreStrategic or Co-development PartnerIndependent network of researchers with common interest in Vascular Liver Diseases. Virginia Hernández-Gea serves as Chair of VALDIG while also coordinating ERN Rare-Liver activities.
• OrphanetcoreTechnology or IntegrationUnique resource gathering and improving knowledge on rare diseases to improve diagnosis, care, and treatment. Orphanet maintains the Orphanet rare disease nomenclature (ORPHAcode) essential for rare disease visibility in health information systems.
• YAEL Stiftung (YAEL Foundation)minorStrategic or Co-development PartnerGerman foundation supporting activities related to rare liver diseases and patient advocacy.

Scale indicators13 records

Recent moves6 records

Expansion highlights7 records

Broad incumbents

• EURORDIS - Rare Diseases Europe: A pan-European patient-driven alliance representing over 1,000 rare disease patient organisations. Operates broadly across rare diseases, including liver conditions, making it an adjacent incumbent covering ERN Rare-Liver's disease area at the European level.
• European Association for the Study of the Liver (EASL): The leading European professional society for hepatology. EASL collaborates with ERN Rare-Liver on guidelines, congresses, and the EASL Campus educational platform, making it the broader incumbent in liver disease knowledge dissemination.
• European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN): The European multi-professional society for paediatric GI, liver, and nutritional conditions. ESPGHAN is a strategic partner of ERN Rare-Liver for paediatric hepatology activities and represents the broader paediatric hepatology community.
• Orphanet: A reference portal for rare diseases maintained by a consortium of European institutions. Provides nomenclature, epidemiology, and care resource data used across ERNs including ERN Rare-Liver, making it an enabling infrastructure peer.

Emerging players

• International Registry of Congenital Porto-Systemic Shunts (IRCPSS): An international registry collecting data on congenital portosystemic shunts with virtual Clinical Case Conferences. Comparable as a niche research and case coordination platform intersecting with ERN Rare-Liver's disease scope.

Regional players

• NORD (National Organization for Rare Disorders): The US-based umbrella organisation for rare diseases with similar mission to ERN Rare-Liver at the American level. Operates in a different geography but provides comparable rare disease advocacy, research, and care coordination functions.

Direct peers

• ERN-RND (European Reference Network for Rare Neurological Diseases): A peer European Reference Network operating under the same EU framework and governance structure as ERN Rare-Liver, focused on rare neurological diseases. Directly comparable as one of the 24 approved ERNs with similar funding, platform, and operational models.
• FILFOIE (Filière de santé des maladies rares du foie): The French national reference network for rare liver diseases in adults and children. Directly comparable as a peer rare liver disease network, though operating at the national level rather than the European level covered by ERN Rare-Liver.
• Vascular Liver Disease Group (VALDIG): An independent European research network focused on vascular liver diseases with overlapping leadership with ERN Rare-Liver. Directly comparable in disease focus area and research collaboration model.
• ERN-EuroBloodNet (European Reference Network on Rare Haematological Diseases): Another of the 24 EU-approved European Reference Networks, focused on rare haematological diseases. Directly comparable in mandate, governance, and infrastructure, making it a structural peer to ERN Rare-Liver.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat6 records

Key risks6 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/@ernrareliver
• LinkedInlinkedin.com/company/ern-rare-liver
• Instagraminstagram.com/ernrare_liver

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about ERN RARE-LIVER