Ern Eurogen

ERN eUROGEN is the European Reference Network (ERN) for rare and complex urogenital diseases and conditions, funded by the EU. ERNs are virtual networks gathering doctors and researchers with high expertise in the fields of rare or low-prevalence and complex diseases, transforming the care of patients from all over Europe. In 2017, the European Commission (EC) launched 24 ERNs involving over 900 highly specialised healthcare teams, located in over 300 hospitals in 26 EU Member States. ERN eUROGEN comprises 52 healthcare providers (as full members), 4 associated national centres and 4 national coordination hubs (as affiliated partners) across 20 EU Member States. We use the Clinical Patient Management System (CPMS), a secure web-based platform, to share pseudonymised patient data between healthcare providers, connecting multidisciplinary teams and allowing faster diagnosis and treatment across national borders. We run regular training and education activities targeting healthcare professionals and patients. We are developing clinical practice guidelines and clinical decision support tools that can be used by the wider community of clinicians dealing with these conditions. We have launched a patient registry. We are actively involved in research that can improve the understanding and treatment of the rare diseases and complex conditions within our scope. To ensure that patient voices are heard continuously at all levels within our ERN, we work closely with our ePAG (ERN Patient Advocacy Group) bringing together elected ePAG Advocates (patient representatives) and affiliated patient organisations. We believe wholeheartedly in the EC's mission statement for ERNs "Share. Care. Cure." and are committed to transforming the care for rare and complex urogenital diseases and conditions by 2030.