J Pediatr Urol. 2025 Aug 21:S1477-5131(25)00447-4. doi: 10.1016/j.jpurol.2025.08.020. Online ahead of print.
ABSTRACT
The European Reference Networks (ERNs) initiative was started by the European Commission. The initiative was launched in 2017 in response to the 2011 EU Directive on Cross-Border Healthcare (Directive 2011/24/EU), which emphasized the need to improve healthcare for patients with rare diseases and complex conditions across the European Union. Currently, 24 ERNs are available for rare diseases. The ERN for rare uro-recto-genital diseases and complex conditions (ERN eUROGEN) is a cornerstone in improving the management of rare and complex uro-recto-genital conditions in Europe. Its collaborative model ensures that expertise and innovation are accessible to all EU patients, regardless of location, while fostering significant advancements in research, education, and healthcare delivery. The multinational inclusion of Centers of expertise includes 20 countries and 52 healthcare providers (in the ERN community, a healthcare provider is an official member of an ERN and is usually a large hospital or institution with academic and research capabilities). In this review article, we interviewed two leading experts from ERN eUROGEN to increase general knowledge of the ERN initiative and its evolution. We also aimed to show the benefits of participation from a clinical standpoint and how patients with rare diseases can benefit from virtual consultations with experts at other centers and in different countries.
PMID:40914691 | DOI:10.1016/j.jpurol.2025.08.020
