eUROGEN - European Reference Network for Rare Urogenital Diseases

Rare and complex uro-recto-genital conditions can require surgical correction, often duringthe neonatal period or in childhood. Urinary and faecal incontinence are a heavy burden on paediatric, adolescent and adult patients. Affected individuals require life-long care provided by multidisciplinary teams of experts who plan and perform surgery and providepost-operative care with additional support from physiotherapy and psychology teamswhen needed.ERN eUROGEN provides independently evaluated best practice guidelines and improves the sharing of outcomes. For the first time, itaims to offer the capacity for tracking longterm outcomes for patients over a 15-20 yearperiod through the ERN eUROGEN Registry.The network collects data and materials wherethey are lacking; develops new clinical guidelines; builds evidence of best practice; identifies variations in current clinical practice;develops education and training programmes;sets the research agenda in collaboration withpatient representatives; and shares knowledgethrough participation in virtual consultationson the CPMS and through multidisciplinaryteams. New specialists for rare and complex uro-recto-genital diseases benefit fromspecific training and clinical exchange visits offered by the ERN eUROGEN exchangeprogramme.Ultimately, the network seeks to advanceinnovation in medicine and improve diagnostics and treatment for rare and complexuro-recto-genital patients through the ‘Share.Care. Cure’ strategy.