ERN eUROGEN is the European Reference Network (ERN) for Rare Urogenital Diseases and Complex Conditions. Half a million people in Europe are diagnosed with a rare disease every year, and rare or low-prevalence complex diseases affect the daily lives of around 30 million EU citizens. Health systems in the European Union aim to provide high-quality, cost-effective care, but no country can meet this challenge alone. The EU and national governments are committed to improving the recognition and treatment of rare and complex conditions by strengthening European-level cooperation and coordination and supporting national plans for rare diseases. European Reference Networks (ERNs) are one of the greatest achievements of the rare disease community in Europe. Funded by the European Commission under the EU4Health programme, ERNs are virtual networks connecting healthcare providers (HCPs) professionals and patients across the EU and Norway, with the aim of tackling complex or rare diseases and conditions by pooling knowledge and resources. They aim to facilitate discussion on rare diseases and complex conditions that require highly specialised treatment and concentrated knowledge and resources, thereby improving diagnoses and treatment for patients. The first 24 ERNs were launched in March 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals. In January 2022, 620 new members joined the ERNs, unanimously approved by the Board of Member States for ERNs (BoMS) and funded by the European Commission (EC). As a result of this call, the ERNs include more than 1400 healthcare units from more than 400 hospitals across all 27 EU Member States and Norway. You can read more about joining the ERNs here. The EC has a webpage that outlines how the ERNs work, the legislation and coordination involved, as well as information on the monitoring of the ERNs, and the latest news on the networks. ERN eUROGEN aims to address the same issues, challenges, and gaps as those in the 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. Millions of people suffer from urogenital diseases annually, but only a small fraction suffer from urogenital diseases that are rare. In general, a disease is considered rare by the EU when it affects fewer than 1 in 2000 people (<0,05%). However, in the case of some highly complex urogenital conditions, the prevalence rate is significantly lower than the EU definition of a rare disease (for example, urethral diverticula, the formation of a pocket or pouch susceptible to infections along the urethra, is only found in 1 in 250,000 (0,0004%) people) and the little knowledge that is available, is often scattered amongst a small number of expert specialists and unique centres located in disparate countries and regions. Urinary and faecal incontinence is a very heavy burden on paediatric, adolescent, and adult patients and has a significant impact on them, their families, and their quality of life. The low incidence rate and scatted expertise impede diagnosis, satisfactory advice, and treatment and encumber healthcare systems and society with a large cumulative cost burden. Furthermore, there is a gap 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. Patient-centred parameters as well as those relating to best practice, expectation management, and disease-specific outcomes do not currently exist for these diseases and conditions. This is why ERN eUROGEN’s activities are essential to advance innovation in medicine, address gaps and collect evidence at the European level, improve diagnostics and treatment, and ultimately create equitable access for as many patients as possible in an efficient and cost-effective way. The network has streamlined these activities into the following work packages: Information brochures (2022 editions) produced by the EC about the ERNs can be downloaded in the following EC languages (+ Norwegian):ERNs & ERN eUROGEN
About European Reference Networks
About ERN eUROGEN
ERN eUROGEN Work Packages
ERN Information Brochures
ERNs & ERN eUROGEN
