ERN eUROGEN is the European Reference Network (ERN) for rare uro-recto-genital diseases and complex conditions. Millions of people suffer from uro-recto-genital conditions annually, but only a small fraction suffer from uro-recto-genital conditions that are rare. Generally, the EU considers a condition rare when it affects fewer than 1 in 2,000 people (<0.05%). However, in the case of some highly complex uro-recto-genital conditions, the prevalence rate is significantly lower than the EU definition; for example, urethral diverticulum, a localised outpouching of the urethra into the anterior vaginal wall, has an estimated annual incidence of 17.9 per 1,000,000 (0.02%) per year. Uro-recto-genital conditions significantly impact paediatric, adolescent, and adult patients, their families, and their quality of life. The little available knowledge is often scattered amongst a small number of expert specialists and unique centres located in disparate countries and regions, which impedes diagnosis, satisfactory advice, and treatment, and encumbers healthcare systems and society with a significant cumulative economic burden. Patient-centred parameters, as well as those relating to best practice, expectation management, and disease-specific outcomes, have not previously existed for these diseases and conditions. Furthermore, a gap has existed between paediatric specialists treating acute postnatal problems and adult outcomes. Rare uro-recto-genital diseases and complex conditions can require surgical correction, often during the neonatal period or in childhood, but affected individuals require life-long care provided by multi-disciplinary teams (MDTs) of experts who plan and perform surgery and provide post-operative physiotherapy and psychological support. Therefore, ERN eUROGEN aims to address the same issues, challenges, and gaps as those in the overall ERN “Share. Care. Cure.” approach, and additionally, those relating to rare uro-recto-genital diseases and complex conditions that affect either the reproductive organs or the urorectogenital system. ERN eUROGEN’s activities are essential to advance innovation in medicine, address gaps and collect evidence at the European level, improve diagnostics, treatment and outcomes, and ultimately create more equitable access for as many patients as possible efficiently and cost-effectively. The below target groups all benefit from ERN eUROGEN’s activities:ERN eUROGEN
ERN eUROGEN Target Groups
ERN eUROGEN
