Patient perspectives on European Reference Networks: supporting a flagship initiative through lived experience

Abstract The review by Graessner et al. provides a comprehensive overview of the evolution and achievements of the European Reference Networks (ERNs) as a flagship initiative of the European Union in the field of rare and complex diseases. This commentary offers a complementary perspective written from lived experience, as a parent and as a patient advocate involved in the ERN ecosystem. From this viewpoint, ERNs represent not only an organisational success, but a significant shift in how specialised expertise can be accessed across borders. The commentary considers how ERNs can contribute to reducing diagnostic uncertainty, facilitate cross-border expertise without unnecessary patient travel, and support patient-centred care through the structured involvement of patient advocates, illustrated with examples from ERN EpiCARE and the Dravet syndrome community. It also discusses key challenges for the next phase of ERN development, particularly the need for equitable access across countries and effective interaction between ERNs and national reference networks or equivalent national and regional expert-centre and referral structures. Special attention is given to the conditions under which cross-border patient mobility remains necessary, the role ERNs can play in validating such referrals, and the relevance of social security coverage in ensuring fairness. Finally, the commentary addresses the role of ERNs in supporting continuity of specialised expertise during critical transitions, such as the move from paediatric to adult care, and argues that strengthening the supportive role of ERNs in longitudinal care pathways is essential to prevent fragmentation of care. From a patient perspective, preserving meaningful involvement and focusing on outcomes that truly matter to families will be key to ensuring that ERNs continue to fulfil their promise.