ERN RARE-LIVER
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.
- Company typePrivate
- Founded-
- HeadquartersHamburg, Germany
- Headcount1–10
- GTM typeB2B
- OfferingServices
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.
ERN RARE-LIVER firmographics
Firmographics- 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
ERN RARE-LIVER industry classification
Industry- 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
Where ERN RARE-LIVER is headquartered
LocationHeadquarters
- HQ city
- Hamburg
- HQ country
- Germany
- HQ region
- Europe
Offices1 record
Markets served
ERN RARE-LIVER business model
Business model- GTM type
- B2B
- Offering type
- Services
- Cost components
- Personnel, Operations, Infrastructure, Marketing or Sales, Technology or R&D, Others
Revenue model
- 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
ERN RARE-LIVER product offering
Product offeringCore 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
Companies that use ERN RARE-LIVER
Customer profileNamed customers11 records
Segments3 records
Ideal customer profiles3 records
ERN RARE-LIVER technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Feature2 records
ERN RARE-LIVER partnerships and signals
Strategic signalPartnerships
Nine partnerships are on record, tiered core and minor.
- JARDIN Joint ActioncoreJoint 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)coreEASL 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)coreMulti-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)minorNon-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)coreHorizon 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)coreFrench 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)coreIndependent 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.
- OrphanetcoreUnique 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)minorGerman foundation supporting activities related to rare liver diseases and patient advocacy.
Scale indicators13 records
Recent moves6 records
Expansion highlights7 records
ERN RARE-LIVER competitors and assessment
Company assessmentBroad 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
ERN RARE-LIVER social profiles
Digital presenceERN RARE-LIVER financial estimates
Financial estimateRevenue estimate
Valuation estimate
ERN RARE-LIVER leadership team
Management profileNumber of profiles
Profiles1 record
ERN RARE-LIVER funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
ERN RARE-LIVER M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about ERN RARE-LIVER
What does ERN RARE-LIVER do?
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.
Is ERN RARE-LIVER a public or private company?
ERN RARE-LIVER is a private company. It is classified as state government owned and is currently operating.
When was ERN RARE-LIVER founded?
ERN RARE-LIVER was founded in -1. It employs 1 to 10 people.
Where is ERN RARE-LIVER based?
ERN RARE-LIVER is headquartered in Hamburg, Germany, in the Europe region.
How does ERN RARE-LIVER make money?
One revenue line is on record: european Commission Funding.
Who are ERN RARE-LIVER's main competitors?
Broad incumbents on record are EURORDIS - Rare Diseases Europe, European Association for the Study of the Liver (EASL), European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) and Orphanet. International Registry of Congenital Porto-Systemic Shunts (IRCPSS) is listed as an emerging player. NORD (National Organization for Rare Disorders) is listed as a regional player. Direct peers are ERN-RND (European Reference Network for Rare Neurological Diseases), FILFOIE (Filière de santé des maladies rares du foie), Vascular Liver Disease Group (VALDIG) and ERN-EuroBloodNet (European Reference Network on Rare Haematological Diseases).
Does ERN RARE-LIVER have an API?
No public API is recorded for ERN RARE-LIVER.
What industry is ERN RARE-LIVER in?
ERN RARE-LIVER's product category is Healthcare Reference Network — Rare Hepatological Diseases. Its primary akta.pro industry code is HLAKAEAB, Hepatology & Liver Disease, with a secondary code of HLAKAEAK, Transplant Hepatology. Its NAICS code is 54199 and its SIC code is 8090.