Governance
Management Team
Network Coordination
Ansgar W. Lohse
- Network Coordination
University Medical Centre Hamburg-Eppendorf, Germany
Paediatric lead
Marianne Hørby Jørgensen
- Paediatric lead
- Pillar Leads
- Autoimmune Hepatitis (AIH)
Rigshospitalet University of Copenhagen, Denmark
Deputy Coordinator and Lead Clinical Patient Management System (CPMS)
Marcial Sebode
- Deputy Coordinator and Lead Clinical Patient Management System (CPMS)
- Deputy coordinator
- Autoimmune Hepatitis (AIH)
University Medical Centre Hamburg-Eppendorf, Germany
R-LIVER Registry Lead
Christoph Schramm
- R-LIVER Registry Lead
- Research
University Medical Centre Hamburg-Eppendorf, Germany
Representatives of the hepatology societies (EASL & ESPGHAN)
Virgínia Hernández Gea
Hospital Clínic i Provincial de Barcelona, Spain
- Representatives of the hepatology societies (EASL & ESPGHAN)
EASL Representative
Marianne Hørby Jørgensen
Rigshospitalet (RH), Copenhagen university hospital
- Representatives of the hepatology societies (EASL & ESPGHAN)
ESPGHAN Representative
Emer Fitzpatrick
King’s College Hospital London
- Representatives of the hepatology societies (EASL & ESPGHAN)
ESPGHAN Representative
Patient Leads
José Willemse
Adult Patient Lead
- Patient Leads
- Quality of Life (QoL)
Angela Leburgue
- Patient Leads
- Primary Biliary Cholangitis (PBC)
ALBI France
Training and Education Committee
Juan Carlos García-Pagán
- Training and Education Committee
- Clinical Practice Guidelines
Hospital Clínic i Provincial de Barcelona, Spain
Claus Petersen
- Training and Education Committee
Hannover Medical School, Germany
Anja Geerts
University Hospital Ghent, Belgium
- Training and Education Committee
Isabel Gonçalves
- Training and Education Committee
Centro Hospitalar Universitario de Coimbra, Portugal
Scientific advisor
Emma Andersson
Karolinska Institutet, Sweden
- Scientific advisor
Network Project Management
Hendrik Matthies
Project Manager (Grant Management, Finance Controlling, Evaluation)
- Network Project Management
University Medical Centre Hamburg-Eppendorf, Germany
Nagham Issa
Project Manager (CPMS, R-LIVER, Stakeholder Relations & Partnerships)
- Network Project Management
University Medical Centre Hamburg-Eppendorf, Germany
Caren Ramien
Scientific Officer (Clinical Practice Guidelines, Research & Surveys)
- Network Project Management
University Medical Centre Hamburg-Eppendorf, Germany
Kari Klein
Project Manager (Training & Education, Disease Working Groups, Social Media)
- Network Project Management
University Medical Centre Hamburg-Eppendorf, Germany
Transversal Working Groups - Leads
Quality of Life (QoL)
José Willemse
Adult Patient Lead
- Patient Leads
- Quality of Life (QoL)
Marianne Samyn
- Quality of Life (QoL)
King’s College Hospital London, UK
Maciej Janik
- Quality of Life (QoL)
Medical University of Warsaw Hospital, Poland
Wunsch Ewa
- Quality of Life (QoL)
Pomeranian Medical University, Szczecin
Transition
Ruth De Bruyne
- Transition
Ghent University Hospital, Belgium
Liver Disease in Pregnancy
Wiebke Papenthin
- Liver Disease in Pregnancy
- Wilson Disease (WD)
Morbus Wilson e.V., Germany
Dr. Leona Dold
- Liver Disease in Pregnancy
Universitätsklinikum Bonn
Willy Visser
- Liver Disease in Pregnancy
Erasmus MC: University Medical Center Rotterdam, Netherlands
Nurses Working Group Leads
Martina Fellinghauer
Liver Care Nursing Austria, AKH Wien, Austria
- Nurses Working Group Leads
Jen Clancy
Royal Free London NHS Foundation Trust, Hepatology CNS, UK
- Nurses Working Group Leads
Denise Schäfer
Liver Care Nursing Austria, Ordensklinikum Linz GmbH, Barmherzige Schwestern, Austria
- Nurses Working Group Leads
Neus Llarch Alfonso
BCLC – Hepatic Oncology Unit – Hospital Clínic, Barcelona, Spain
- Nurses Working Group Leads
Disease Working Groups - Leads
Autoimmune Hepatitis (AIH)
Marcial Sebode
- Deputy Coordinator and Lead Clinical Patient Management System (CPMS)
- Deputy coordinator
- Autoimmune Hepatitis (AIH)
University Medical Centre Hamburg-Eppendorf, Germany
Marianne Hørby Jørgensen
- Paediatric lead
- Pillar Leads
- Autoimmune Hepatitis (AIH)
Rigshospitalet University of Copenhagen, Denmark
Primary Biliary Cholangitis (PBC)
Alessio Gerussi
ASST-Monza, Ospedale San Gerardo, Italy
- Primary Biliary Cholangitis (PBC)
Angela Leburgue
- Patient Leads
- Primary Biliary Cholangitis (PBC)
ALBI France
Adriaan van der Meer
Erasmus UMC Rotterdam, Netherlands
- Primary Biliary Cholangitis (PBC)
Primary Sclerosing Cholangitis (PSC)
Martine Walmsley
- Primary Sclerosing Cholangitis (PSC)
PSC support, UK; EASL Policy and Public Health Committee
Norman Junge
- Primary Sclerosing Cholangitis (PSC)
Hannover Medical School, Germany
Nora Cazzagon
Azienda Ospedaliera Università di Padova, Italy
- Primary Sclerosing Cholangitis (PSC)
Genetic Cholestatic Disease
Emmanuel Gonzales
- Genetic Cholestatic Disease
Hôpital Bicêtre, Assistance Publique – Hôpitaux de Paris, France
Henkjan J. Verkade
- Genetic Cholestatic Disease
University Medical Center Groningen, Netherlands
Verena Keitel
- Genetic Cholestatic Disease
Otto-von-Guericke University Magdeburg, Germany
Biliary Atresia (BA)
Björn Fischler
- Biliary Atresia (BA)
Karolinska University Hospital Stockholm, Sweden
Ekkehard Sturm
Universitätsklinikum Tübingen, Germany
- Biliary Atresia (BA)
Alpha-1 Antitrypsin Liver Disease (AATD)
Pavel Strnad
- Alpha-1 Antitrypsin Liver Disease (AATD)
University Hospital Aachen, Germany
Mathias Ruiz
- Alpha-1 Antitrypsin Liver Disease (AATD)
CHU Lyon, France
Frank Willersinn
- Alpha-1 Antitrypsin Liver Disease (AATD)
Alpha-1 Plus asbl, Belgium
Acute Liver Failure (ALF)
Dominic Lenz
- Acute Liver Failure (ALF)
Heidelberg University Hospital, Germany
Polycystic Liver Disease (PLD)
Joost P.H. Drenth
- Pillar Leads
- Polycystic Liver Disease (PLD)
- Biliary Malformations (BM)
Amsterdam University Medical Center, Netherlands
Vascular Liver Disease (VLD)
Aurélie Plessier
- Clinical Practice Guidelines
- Vascular Liver Disease (VLD)
Hôpital Beaujon, Assistance Publique – Hôpitaux de Paris, France
Valerie McLin
- Vascular Liver Disease (VLD)
University Hospitals Geneva, Swiss Centre for Liver Disease in Children, Switzerland
Biliary Malformations (BM)
Joost P.H. Drenth
- Pillar Leads
- Polycystic Liver Disease (PLD)
- Biliary Malformations (BM)
Amsterdam University Medical Center, Netherlands
Janneke Bruggink
- Biliary Malformations (BM)
University Medical Center Groningen, Netherlands
Wilson Disease (WD)
Thomas Sandahl
- Wilson Disease (WD)
Aarhus Universitetshospital, Denmark
Piotr Socha
- Wilson Disease (WD)
Children’s Memorial Health Institute, Warsaw
Wiebke Papenthin
- Liver Disease in Pregnancy
- Wilson Disease (WD)
Morbus Wilson e.V., Germany
Eduardo Couchonnal-Bedoya
- Wilson Disease (WD)
Hospices Civils de Lyon, France
Rare Liver Tumours
Maria Reig
- Rare Liver Tumours
Hospital Clínic i Provincial de Barcelona, Spain
Johann von Felden
- Rare Liver Tumours
University Medical Centre Hamburg-Eppendorf, Germany
Haemochromatosis
Antonello Pietrangelo
- Haemochromatosis
University Hospital of Modena, Italy
Alveolar Echinococcosis
Prof. Annalisa Berzigotti, MD, PhD
- Alveolar Echinococcosis
Inselspital Bern, Department of Visceral Surgery and Medicine
Anja Lachenmayer
- Alveolar Echinococcosis
Inselspital Bern, Department of Visceral Surgery and Medicine
ERN RARE-LIVER
Organisational Structure
The ERN RARE-LIVER
Management Board
The ERN RARE-LIVER Management Board holds regular meetings to consult on the various activities. It is composed of members representing the following areas:
- Coordination
- Patient representation (ePAG)
- Clinical Patient Management System (CPMS)
- R-LIVER Registry
- Quality of Life
- Clinical practice guidelines
- The three rare liver disease pillars
- Hepatology societies (adult and paediatric)
- Basic research
- Project Management