The European RiTA Consortium Holds In-Person Meeting in Barcelona with Strong Patient Involvement
This EU-funded initiative aligns with the principles of the European Reference Networks (ERNs), which foster cross-border collaboration to improve care for people living with rare and complex diseases. The meeting was coordinated by Dr. Virginia Hernández-Gea, principal investigator of the project, hepatologist at Hospital Clínic de Barcelona and researcher at FRCB_IDIBAPS and CIBERehd. During the event, scientific progress across the different work packages (WPs) was reviewed, data generated so far was discussed, and strategic directions for the second half of the project were defined.
A Truly Multidisciplinary Consortium
RiTA brings together hepatologists, pathologists, radiologists, basic scientists, and sociologists, enabling a comprehensive approach to PortoSinusoidal Vascular Disease (PSVD). This diversity of expertise has been key to advancing molecular characterization, biomarker development, and risk stratification strategies.
In addition, the sociology work package collaborates closely with the ERN RARE-LIVER Quality of Life group, reinforcing the patient-centered and psychosocial dimensions of the project.
Active Participation of Patient Associations
In line with the ERN philosophy, RiTA has integrated patient associations from Spain and France since its inception, including AEVH (Asociación Española de Enfermos Vasculares Hepáticos) and AMVF (Association des maladies vasculaires France). During the meeting, a dedicated session was held between representatives of these associations and the social science team, led by Dr. Anouck Alary and Dr. Agnes Dumas.
This space allowed for the collection of patient experiences and needs, and contributed to the development of Quality of Life (QoL) assessment tools and qualitative studies aimed at generating research outcomes with real-life impact for affected individuals.
Commitment to the Mission of ERN RARE-LIVER
RiTA is fully aligned with the goals of ERN RARE-LIVER, the European network dedicated to rare liver diseases, which promotes improved clinical care, pediatric-to-adult transition, professional training, and active patient involvement in research.
Importantly, three clinical groups within the RiTA consortium are full ERN members, strengthening the direct connection with the network and its mission. From the outset, the project has benefited from the support of ERN RARE-LIVER, which has enabled the launch of the European PSVD registry within the network—a key milestone for advancing knowledge and care in this rare condition.
The Barcelona meeting marked a pivotal moment in consolidating this vision, reinforcing the consortium’s commitment to collaborative science that is patient-centered and aimed at transforming clinical practice in rare liver diseases such as PSVD.