EUROPEAN REFERENCE NETWORKS (ERNs)
European Reference Networks (ERNs) are virtual European networks involving healthcare providers for patients with rare diseases or who need very specific interventions that do not exist across Europe. By creating a clear governance structure for knowledge sharing and care coordination across the EU, the ERNs aim to tackle complex or rare diseases and conditions that require highly specialised treatment and concentrated knowledge and resources.
ERNs are based on directive 2011/24/EU of the European Parliament and the council European citizens have the right to cross-border healthcare. Here, the European Union provides rules for facilitating the access to safe and high-quality cross-border healthcare and promotes cooperation on healthcare between Member States.
Between 5 000 and 8 000 rare diseases affect the daily lives of around 30 million people in the EU. The provision of high-quality, cost-effective care and highly specialised treatment by EU health systems is particularly challenging for patients with rare or low-prevalence complex diseases or conditions. This is due to both the scarcity of expertise and to the scattering of small patient populations across the EU, sometimes in isolated locations where expertise does not exist or cannot be accessed. This is especially true when the prevalence of such conditions is low, as is the case for rare diseases.
To this end, for the first time, in order to provide a unique opportunity for rare diseases clinicians to work across borders in Europe, in early 2017, the European Commission approved the first 24 European Reference Networks (ERN), involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 Member States.
WORK OF THE ERNs
ERNs are not directly accessible to individual patients. However, with a patient’s consent and in accordance with the rules of their national health system, a patient’s information can be referred to the relevant ERN member in their country by their healthcare provider. ERN members then consult, exchange and share knowledge with each other to review a patient’s diagnosis and treatment. Coordinators and other networks leaders convene ‘virtual’ advisory panels of medical specialists across different disciplines, using a dedicated IT platform and telemedicine tools.
Besides patient diagnosis and treatment, ERN members are also involved in:
– Development of guidelines, training and knowledge exchange
– Facilitation of large clinical studies to improve understanding of diseases
– Development of new drugs and medical devices by gathering patient data
– Development of new care models, e-Health solutions and tools
The ERNs are featured in the Commission’s EU Protects campaign which aims to raise awareness of the ways in which the EU combats global challenges to protect its citizens.
At the core of the campaign is the production of a series of engaging videos and web features that cover 4 critical areas: migration and global stability, crime and terrorism, the economic situation, and health and the environment. These videos and features showcase real-life stories from the point of view of individuals from European countries that have been involved in an actual safety or security incident, challenge or project, providing an authentic demonstration of European solidarity and collaboration.
The ERNs are an example of how a strong and efficient European collaboration can make a difference in the life of some persons.
