ERN eUROGEN

• Rare Diseases and Complex Conditions
• European Reference Networks
• ERN eUROGEN
• Other ERNs

ERN eUROGEN

ERN eUROGEN is the European Reference Network (ERN) for rare urogenital diseases and complex conditions.

Millions of people suffer from urogenital conditions annually, but only a small fraction suffer from urogenital 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 urogenital 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.

Urogenital 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 urogenital 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 urogenital diseases and complex conditions that affect either the reproductive organs or the urinary 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.