Authors: Mercedes Guilabert, Agnes Dumas, Eva Gil-Hernández, Lynda Sifer-Rivière, Jane Sattoe, Guenda Bernegger, Maria Caiata Zufferey, María Purificación, Giada Danesi, Virginia Hernandez-Gea, Sarwa Darwish Murad, Pierre-Emmanuel Rautou, Laure Elkrief, Benedetta Terziroli Beretta-Piccoli, Andrea De Gottardi, Annalisa Berzigotti, Aurelie Plessier, José Joaquín Mira
Journal: Hepatology Communications • 2026
Overview
This qualitative European study explored challenges and unmet needs in the care of people living with rare vascular liver diseases. Interviews were conducted with 13 patients, 7 representatives of patient organizations, and 17 health care providers in France, Spain, Switzerland, and the Netherlands, to explore experiences of diagnosis, follow-up, and daily life.
Key findings
Participants identified four main challenges in the care of rare vascular liver diseases: delays and difficulties in reaching a diagnosis, challenges in communicating and understanding the diagnosis, uncertainty about the causes, progression, and treatment of the diseases, and poor coordination between health care professionals, particularly when other diseases or comorbidities were present. Support for mental health and fatigue was also considered insufficient, while reproductive and sexual health required more tailored communication. Patients and patient organizations additionally highlighted the importance of accessible information, peer support, and greater involvement of caregivers.
These findings highlight the need for clearer communication, better coordination of care, and greater attention to the psychological, social, and everyday needs of people living with rare vascular liver diseases.