ERN Liver Talk 25.11.2025: Pregnancy and Chronic Liver Disease: Patient Experiences and Clinical Perspectives

An ERN Liver Talk is 60 minutes including a short presentation followed by a moderated discussion, including audience engagement (attendees can interact via microphone and video) and further participation such as live polling and pre-submitted questions.

Please use this link:https://uke-de.zoom-x.de/j/62903918563?pwd=KjvpaDAGTwa2SFigJqa52noySzaQO0.1 

Speakers: 

• Teresa Antonini: Hôpital de la Croix-Rousse, France
• Leona Dold: Hospital Verbundkrankenhaus Linz- Remagen, Germany 

Chairs:

• Willy Visser, Erasmus MC Rotterdam, Netherlands
• A. Roth, ERN RARE-LIVER Youth Panel, Germany 

Patient Panel:

• Jeanina Nieuwdorp ERN RARE-LIVER ePAG, Netherlands
• Caroline Kühn, Germany

Agenda:

Pregnancy in women with chronic liver disease presents unique challenges and uncertainties for both patients and clinicians. For many years, pregnancy was considered unsafe in the context of advanced liver disease; however, medical progress has improved outcomes, and more women are now experiencing successful pregnancies while living with rare liver conditions. Despite this, patients and families still face uncertainty, and clinicians often have limited evidence-based guidance to rely upon.

This webinar aims to bridge that gap by combining medical expertise with lived experiences. By giving patients the opportunity to share their personal journeys alongside clinical context from hepatologists, the webinar will highlight both the possibilities and the challenges of pregnancy with rare liver disease. The event will also provide space for open discussion, empowering patients with knowledge while supporting clinicians with patient-centred insights.

Points/aspects to be discussed during the talk:

• Overview of the webinar purpose and ERN Youth Panel input
• Focused expert presentations:
  • Medical background on pregnancy in chronic liver disease.
  • Key considerations for autoimmune liver disease and Wilson’s disease in the context of pregnancy.
• Patient perspectives:
  • Patient with autoimmune hepatitis (AIH) sharing pregnancy experience.
  • Patient with Wilson’s disease sharing pregnancy experience.
• Guided discussion:
  • Dialogue between patients, clinicians, and audience on lived experience, challenges, and solutions.
  • Physician available to answer medical questions.
• Live Q&A:
  • Audience interaction, live polling on key issues, questions collected from patients and clinicians. 

Short bios:

Alanis Roth is 21 years old and comes from Frankfurt, Germany. She is studying Molecular Medicine in Tübingen, but moved to Barcelona for an Erasmus exchange year. She was diagnosed with Wilson’s disease at the age of 9 and is under the care of Heidelberg University Hospital. Since 2023, she has been part of the ERN RARE-LIVER Youth Panel.

Willy Visser, Erasmus MC, Rotterdam, the Netherlands is trained as an internist. She specialized in obstetric medicine. Until September 2021, she worked at Erasmus MC, Rotterdam, the Netherlands as an obstetric physician. She has been retired since September 2021 but is still involved in research. Her research interests focus on preeclampsia, HELLP-syndrome and acute fatty liver of pregnancy. She is one of the leaders of the ERN Pregnancy Working Group

Leona Dold graduated from medical school in 2008, and started her clinical training in the Department of Internal Medicine I at the University Hospital Bonn (Germany). The department is specialized on gastroenterology, hepatology and infectious diseases. From 04/2016-09/2017 she carried out a research project about neutralizing antibodies in Hepatitis C in the laboratory of experimental immunology in Cologne (head: Prof. Dr. F Klein). This work was funded by a stipend from the German Centre for Infection Research (DZIF). After this, she returned to the medical department where she works at the outpatient department for gastroenterology and hepatology and provides a special consultation hour for patients with PSC. Leona is specialized on autoimmune liver diseases, especially PSC.

Teresa Maria Antonini, MD, is graduated from Italy and completed her fellowship in hepatology and liver transplantation at Paul Brousse hospital (Villejuif, France). She worked as consultant hepatologist in Villejuif until 2018, then she moved to Lyon. She is now the medical head of liver transplantation program of Lyon (over than 100 liver transplantation per year) and deputy head of hepatology department. Her hepatology department is the first (and the only one) in France to have been recognized and granted as Intitut Hospitalo-Universitaire (IHU EVEREST: int EgratiVE RESearch in hepaTology). Her clinical and research interests include adult and pediatric liver transplantation particularly transition, and post-transplantation patient care.

Jeanina Nieuwdorp: Jeanina was born in 1973 and lives in Heinkenszand, a village in the south of the Netherlands. She is married and has two daughters (24 and 14). She was diagnosed with AIH in 1987. Due to medication, she is in remission, compensated cirrhosis. She studied social work and worked at the Child Protection Council as an investigator and sitting representative. For 5 years she is rejected. She is a volunteer for the Dutch Liver Patient Association (NLV). Jeanina wants to give the patient perspective a voice and show the patient needs. In 2023 she told her patient journey at the AIH workshop in Maastricht. Since 2024 she is an ERN RARE-LIVER ePAG.

Caroline Kühn is 31 years old and lives with her husband and two-year-old son in Ludwigsburg, southern Germany. After maternity leave, she continued working in innovation consulting. She was diagnosed with Wilson’s disease in 2016, took part in the WTX medication trial, and is under the care of Heidelberg University Hospital.