Tackling rare diseases through the European Reference Networks (ERNs)

Today marks Rare Disease Day. Rare or low-prevalence complex diseases affect the daily lives of around 30 million EU citizens.

The EU4Health programme is building a strong Health Union by funding initiatives to improve patients’ access to information and medical care.

The European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They have been receiving support from several EU programmes, including the EU4Health programme. The main aim of ERNs is to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, knowledge and resources. The ERNs pool together these resources to ensure the best treatment for patients with rare or complex diseases.

Launched in 2017, there are 24 ERNS working in 24 domains. They involve more than 1600 hospitals and over 900 highly-specialised medical teams in 26 EU countries.

The ERNs have also received support from projects funded under the CEF Telecom programme. Actions under CEF Telecom eHealth calls focus on ensuring adequate and efficient use of the European Reference Network Cooperation Platforms (ECP), establishing digital collaborative platforms, and the Clinical Patient Management Systems (CPMS), enabling medical experts from all over the EU to accelerate diagnosis and improve treatments of rare diseases.

Background

EU4Health, with a budget of €5.3 billion, is the fourth and largest of the EU health programmes. The EU4Health programme goes beyond an ambitious response to the COVID-19 crisis to address the resilience of European healthcare systems. The programme provides funding to national authorities, health organisations and other bodies through grants and public procurement, contributing to a healthier Europe.

HaDEA manages the vast majority of the total EU4Health budget and implements the programme by managing calls for proposals and tenders from 2021 to 2027.

The first generation of the Connecting Europe Facility ‘Telecom’ strand (2014-2020) facilitated the cross-border interaction between public administrations, businesses and citizens, by deploying Digital Service Infrastructures (DSI) and broadband networks. The CEF support to digital technologies is continued and further developed in the current multiannual financial framework (2021-2027) under the Digital Europe Programme.

Relevant links

European Reference Networks (ERNs)

How the European Reference Networks support health professionals

How the European Reference Networks support patients

Rare Disease Day