Management Team
Network Coordination
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Ansgar W. Lohse
University Medical Centre Hamburg-Eppendorf, Germany
Paediatric lead
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Marianne Hørby Jørgensen
Rigshospitalet University of Copenhagen, Denmark
Deputy Coordinator and Lead Clinical Patient Management System (CPMS)
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Marcial Sebode
University Medical Centre Hamburg-Eppendorf, Germany
R-Liver Registry Lead
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Christoph Schramm
University Medical Centre Hamburg-Eppendorf, Germany
Representatives of the hepatology societies (EASL & ESPGHAN)
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Emmanuel Gonzales
Hôpital Bicêtre, Assistance Publique – Hôpitaux de Paris, France
ESPGHAN Representative
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Virgínia Hernández Gea
Hospital Clínic i Provincial de Barcelona, Spain
EASL Representative
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Marianne Hørby Jørgensen
Rigshospitalet (RH), Copenhagen university hospital
ESPGHAN Representative
Patient Leads
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Angela Leburgue
ALBI France
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José Willemse
Adult Patient Lead
Nederlandse Leverpatienten Vereniging, Netherlands
Training and Education Committee
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Juan Carlos García-Pagán
Hospital Clínic i Provincial de Barcelona, Spain
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Isabel Gonçalves
Centro Hospitalar Universitario de Coimbra, Portugal
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Claus Petersen
Hannover Medical School, Germany
Scientific advisor
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Emma Andersson
Karolinska University Hospital Stockholm, Sweden
Scientific advisor
Network Project Management
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Sabina Bernhardt
Communication Officer
University Medical Centre Hamburg-Eppendorf, Germany
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Aileen Franke
Project Manager
University Medical Centre Hamburg-Eppendorf, Germany
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Juliane Gaenge
Project Manager
University Medical Centre Hamburg-Eppendorf, Germany
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Hendrik Matthies
Project Manager
University Medical Centre Hamburg-Eppendorf, Germany
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Laura Ruhkopf
Secretary
University Medical Centre Hamburg-Eppendorf, Germany
Transversal Working Groups - Leads
Quality of Life
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Tom Gevers
Radboud University Medical Center Nijmegen
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Marianne Samyn
King’s College Hospital London, UK
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José Willemse
Adult Patient Lead
Nederlandse Leverpatienten Vereniging, Netherlands
Transition
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Ruth De Bruyne
Ghent University Hospital, Belgium
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Deirdre Kelly
Birmingham Children's Hospital NHS Foundation Trust, UK
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João Madaleno
Centro Hospitalar Universitario de Coimbra, Portugal
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Zoe Mariño
Hospital Clínic i Provincial de Barcelona, Spain
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José Willemse
Adult Patient Lead
Nederlandse Leverpatienten Vereniging, Netherlands
Liver Disease in Pregnancy
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Wiebke Papenthin
Morbus Wilson e.V., Germany
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Christina Weiler-Normann
University Medical Centre Hamburg-Eppendorf, Germany
Nurses Working Group Leads
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Jen Clancy
Royal Free London NHS Foundation Trust, Hepatology CNS, UK
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Martina Fellinghauer
Liver Care Nursing Austria, AKH Wien, Austria
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Neus Llarch Alfonso
BCLC – Hepatic Oncology Unit – Hospital Clínic, Barcelona, Spain
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Denise Schäfer
Liver Care Nursing Austria, Ordensklinikum Linz GmbH, Barmherzige Schwestern, Austria
Disease Working Groups - Leads
Primary Biliary Cholangitis (PBC)
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Frederik Nevens
University Hospitals KULeuven, Belgium
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Alessio Gerussi
ASST-Monza, Ospedale San Gerardo, Italy
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Angela Leburgue
ALBI France
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Adriaan van der Meer
Erasmus UMC Rotterdam, Netherlands
Autoimmune Hepatitis (AIH)
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Marcial Sebode
University Medical Centre Hamburg-Eppendorf, Germany
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Marianne Hørby Jørgensen
Rigshospitalet University of Copenhagen, Denmark
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Vincenzo Ronca
University Hospitals Birmingham, UK
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Bert Tomsin
Patiëntenvereniging Zeldzame Leverziekten, Belgium
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José Willemse
Adult Patient Lead
Nederlandse Leverpatienten Vereniging, Netherlands
Primary sclerosing cholangitis (PSC)
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Annika Bergquist
Karolinska University Hospital Stockholm, Sweden
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Norman Junge
Hannover Medical School, Germany
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Martine Walmsley
PSC support, UK; EASL Policy and Public Health Committee
Genetic Cholestatic Disease
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Henkjan J. Verkade
University Medical Center Groningen, Netherlands
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Emmanuel Gonzales
Hôpital Bicêtre, Assistance Publique – Hôpitaux de Paris, France
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Verena Keitel
Otto-von-Guericke University Magdeburg, Germany
Biliary Atresia
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Björn Fischler
Karolinska University Hospital Stockholm, Sweden
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Claus Petersen
Hannover Medical School, Germany
Alpha-1 Antitrypsin Liver Disease (AATD)
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Pavel Strnad
University Hospital Aachen, Germany
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Mathias Ruiz
CHU Lyon, France
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Frank Willersinn
Alpha-1 Plus asbl, Belgium
Acute Liver Failure
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Dominic Lenz
Heidelberg University Hospital, Germany
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José Willemse
Adult Patient Lead
Nederlandse Leverpatienten Vereniging, Netherlands
Polycystic liver disease
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Joost P.H. Drenth
Radboud University Medical Center Nijmegen, Netherlands
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Tess Harris
PKD Charity, UK
Vascular Liver Disease - VALDIG
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Aurélie Plessier
Hôpital Beaujon, Assistance Publique – Hôpitaux de Paris, France
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Valerie McLin
University Hospitals Geneva, Swiss Centre for Liver Disease in Children, Switzerland
Biliary Malformations
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Janneke Bruggink
University Medical Center Groningen, Netherlands
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Joost P.H. Drenth
Radboud University Medical Center Nijmegen, Netherlands
Wilson Disease
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Wiebke Papenthin
Morbus Wilson e.V., Germany
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Thomas Sandahl
Aarhus Universitetshospital, Denmark
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Piotr Socha
Children's Memorial Health Institute, Warsaw
Rare Liver Tumours
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Johann von Felden
University Medical Centre Hamburg-Eppendorf, Germany
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Maria Reig
Hospital Clínic i Provincial de Barcelona, Spain
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)
- Registry
- Quality of Life
- Clinical practice guidelines
- The three rare liver disease pillars
- Hepatology societies (adult and paediatric)
- Basic research
- Project Management