What we do

What We Do: The European Reference Networks & ERN eUROGEN

European Reference Networks (ERNs) are an exciting new form of cooperation at the European level between healthcare providers (HCPs) with specialised expertise. They aim to improve diagnoses and treatment for patients with rare diseases and/or complex conditions.

ERN eUROGEN is one of the 24 ERNs approved by the Board of Member States for ERNs (BoMS). The ERNs are co-funded by the European Commission (EC).

ERN eUROGEN aims to improve diagnosis, create more equitable access to high-quality treatment and care for patients with rare uro-recto-genital diseases and complex conditions needing highly specialised surgery.

Mission Statement

“ERN eUROGEN will deliver quicker specialist evaluation and more equitable access to high-quality diagnosis, treatment and care for patients with rare uro-recto-genital diseases and complex conditions who need highly specialised assessment and surgery.”

Our Vision

Rare uro-recto-genital diseases and complex conditions can require surgical correction, often during the neonatal period or in childhood. 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.

ERN eUROGEN shares knowledge through virtual multidisciplinary team (MDT) meetings, collects data for monitoring and evaluation of its members, provides education and training, develops clinical practice guidelines and clinical decision support tools, and carries out research. Through the ERN eUROGEN Registry, it will, for the first time, offer the capacity for tracking long-term outcomes for patients over a 15 to 20-year period.

ERN eUROGEN will train the next generation of surgeons to increase skill levels and improve outcomes. A priority will be transferring knowledge and training to the Member States with less expertise, thereby increasing the quality of surgical outcomes for patients across Europe and reducing costs.

Ultimately, the network seeks to advance innovation in medicine and improve diagnos­tics and treatment for patients.

To create equitable access for as many patients as possible in an efficient and cost-effective way we have divided our development activities into four categories:

Scope of the ERNs