The European Reference Networks & ERN eUROGEN

The European Reference Networks & ERN eUROGEN

Health systems in the European Union aim to provide high-quality, cost-effective care. However, this is difficult in cases of rare or low-prevalence complex diseases, which affect the daily lives of around 30 million EU citizens.

European Reference Networks (ERNs) are virtual networks involving healthcare providers (HCPs) across Europe. 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 26 EU countries.  They are approved by the Board of Member States for ERNs (BoMS) and funded by the European Commission (EC).

ERN eUROGEN is the European Reference Network for Rare Urogenital Diseases and Complex Conditions. 

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.

ERN eUROGEN Mission & Vision

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:

  1. Coordination & Governance (including our Workstreams & Expertise Areas)
  2. Dissemination and Global Collaboration (including News & Communications, Publications, and Research)
  3. Evaluation & Monitoring
  4. Virtual Multidisciplinary Team (MDT) Consultations (using the Clinical Patient Management System)
  5. Registry & Other Digital Activities (including Guidelines)
  6. Training & Education (including Webinars)