FECAMM networking dinner

On June 19, 2025, European Liver Patient Association (ELPA) representatives participated in a significant networking dinner hosted by FECAMM (Federació Catalana de Malalties Minoritàries, the Catalan Federation of Rare Diseases). The evening’s focus was on fostering patient involvement in the realm of rare disease care and advocacy. FECAMM acts as an umbrella federation for non-profit patient associations across Catalonia, united by a shared dedication to raising awareness, supporting families, promoting accurate diagnoses, and advancing education and treatments for rare conditions. FECAMM coordinates over 30 disease-specific groups. The June dinner in Barcelona provided a venue for ELPA and FECAMM to exchange best practices on integrating patients into decision-making processes, treatment pathways, and advocacy strategies. The event also highlighted current Catalan initiatives—including new registries, awareness campaigns, and upcoming educational programs—to empower patients and families. ELPA representatives discussed their approaches to liver-specific rare diseases, including tools for patient education, the structuring of working groups, and the promotion of shared patient-clinician practices. FECAMM, in turn, shared insights from its Catalan-level coordination, and the dinner culminated in a collective commitment to enhance patient involvement at local, national, and European levels. Both organizations look ahead to joint initiatives aimed at co-developing educational outreach for newly diagnosed families, launching participatory research projects with active patient steering, and strengthening cross-border cooperation within broader European rare disease frameworks.