ERN RARE-LIVER Webinar Series 15 September 2026: The social impact of Vascular Liver Diseases

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

Moderators:

• Virginia Hernández-Gea, Hospital Clínic i Provincial de Barcelona
• Aurélie Plessier, Hôpital Beaujon, Assistance Publique – Hôpitaux de Paris

Speakers:

• Agnès Dumas, INSERM, Institut Paoli-Calmettes
• Jane Sattoe, Rotterdam University of Applied Sciences
• Natalie Uhlenbusch, Universitätsklinikum Hamburg-Eppendorf
• Sophie Pénisson, AMVF

Agenda:

This webinar aims to bring together healthcare professionals, researchers, patients, and advocacy groups to foster a comprehensive understanding of the lived experience of individuals with VLDs. Building on recent evidence from European collaborative studies supported by the ERN, the event will explore the long-term health-related quality of life (HRQoL) of VLD patients, integrating both quantitative data and qualitative insights to underscore the social impact of VLDs.

By highlighting the interplay between medical, psychological, and social dimensions of VLDs, the webinar will promote a holistic, patient-centered approach to care. It will encourage dialogue between disciplines and between professionals and patients, paving the way for improved support systems and more equitable healthcare pathways.

Ultimately, the webinar seeks to bridge the gap between biomedical knowledge and the human experience of rare vascular liver diseases, empowering both professionals and patients to work collaboratively toward better quality of life and social inclusion.

1. Defining the social Impact of diseases
2. The HRQoL of patients with VLDs: a strong impact on mental health
3. Impact on reproductive health and sex-related QOL: a heightened burden for women
4. Loss of productivity and working capacity
5. Social impact of VLDs: insights from qualitative studies
6. Clinical implications

Short bios

Virginia Hernandez-Gea is a physician-scientist specializing in the management of portal hypertension (PH) in cirrhosis and vascular liver diseases (VLD). She works at the hemodynamic unit at Hospital Clinic in Barcelona, an internationally recognized center for VLD management, where she performs liver catheterizations, TIPS placements, and manages patients with PH both due to cirrhosis and VLD. Dr. Hernandez-Gea conducts both clinical and translational research. She currently serves as Chair of VALDIG and has previously been a member of the EASL Scientific Committee, contributing to the development of EASL Clinical Practice Guidelines on vascular liver diseases.

Aurélie Plessier is a hepatologist at Beaujon Hospital (AP-HP), Clichy, France, and coordinator of the French Reference Centre for Vascular Liver Diseases and the FILFOIE Rare Liver Disease Network. Her work focuses on vascular liver diseases and portal hypertension She works closely with patient associations and has recently been involved in European research through the LIVES project on patient-reported outcomes (PROs). She contributes to international guidelines, including EASL and Baveno consensus recommendations.

Agnes Dumas is a sociologist and researcher at INSERM (French Institute for health and medical research). She works in a multidisciplinary research team specialized in the studies of inequities in cancer prevention and care (CALIPSO team, SESSTIM unit), which is located in a comprehensive cancer center in Marseille, France (Institut Paoli-Calmettes). She has been working on the impact of cancer or rare diseases on young adults for the past 15 years, through studies using quantitative, qualitative and participatory research methods. She has recently coordinated a European project on the Quality of life of patients living with vascular LIVEr diseaseS (LIVES).

Jane Sattoe is Associate Professor Life Course Care at the Research Centre for Healthcare Innovation at Rotterdam University of Applied Sciences (the Netherlands). She obtained her PhD at Erasmus University Rotterdam on self-management of young people growing up with chronic conditions. Her research focuses on transition in care, self-management, psychosocial wellbeing, participation, and the lived experiences of people with chronic conditions or disabilities. Using qualitative, quantitative, and mixed methods approaches, she actively involves patients and professionals as partners in research. Her work aims to better understand everyday life with a chronic condition and to improve care and support across life transitions.

Natalie Uhlenbusch is a psychologist and senior researcher with more than 10 years of national and international experience in psychosomatic medicine and health psychology. Based at the Department of Psychosomatic Medicine and Psychotherapy of the University Medical Center Hamburg-Eppendorf, her work focuses on understanding and improving the psychosocial aspects of living with chronic and rare diseases.

Sophie Pénisson is 42 and the mother of a 10-year-old boy. She was diagnosed with Budd-Chiari syndrome at the age of 25, and works as a research mathematician in the biomedical field. She has been a member of the French patient association AMVF since her diagnosis and is also an ePAG member of ERN Rare Liver. She has contributed to developing patient pathways, clinical practice guidelines, and provides testimonials for patients and clinicians.