From Evidence to Action: Launch of the ELPA Rare Liver Diseases Policy Position Paper

On 24 February 2026, to mark World Rare Disease Day (February 28), ELPA hosted a high-level policy event at the European Parliament in Brussels, bringing together policymakers, clinicians, regulators, and patient advocates to address the urgent challenges posed by rare liver diseases. The meeting highlighted the persistent gaps in prevention, early diagnosis, and access to specialised care, while underscoring the significant burden these conditions place on patients and health systems across Europe. Through three dedicated panels, participants explored the scientific context, the lived experiences of patients and caregivers, and the policy solutions needed to move from fragmentation to more integrated EU action. The event also marked the official launch of the ELPA Rare Liver Diseases Policy Position Paper, reinforcing the call for stronger coordination, improved referral pathways—including through European Reference Networks—and more effective alignment of research, regulation, and access to care at the EU level.