Rare diseases are affecting over 30 million people in the EU - over 6 percent of the EU population. While this collective number is high, patient populations for each of the 6,000 rare diseases are low and patients are scattered across countries. The European response to rare diseases spans across different policy areas and EU funding programmes.
The CEF eHealth Digital Service Infrastructure (eHDSI) facilitates the movement of health data across national borders, thus ensuring continuity of care and highly specialised treatment across borders to EU citizens.
Actions under CEF Telecom eHealth calls focused 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 affecting EU citizens.
Launched in 2017 and funded under the Third EU Health programme, the first 24 European Reference Networks (ERNs) play an important role in consolidating and sharing expertise on rare diseases among health professionals. All ERNs benefit from support under CEF, some examples include:
- Under the 2017 CEF call, all ERNs were supported to establish their Operational Helpdesks, adapted to the needs of ERN multidisciplinary healthcare teams and providing necessary training for the use of ERN Core Services (ECP and CPMS).
- Under the 2018 CEF call, the support for e-training/e-learning activities organised by ERNs led to a cross-border knowledge transfer of the new and innovative approaches in the diagnosis of rare and complex diseases and their treatments delivered by the specialists for the relevant ERNs topics with a horizontal outreach. Some projects at a glance:
- Under the 2020 CEF call, the ERNs continued to be funded for IT activities related to the use of the ERN Core Services (ECP and CPMS).
Read our other article on ERNs: “Tackling rare diseases through the European Reference Networks (ERNs)”
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 will be continued and further developed in the next multiannual financial framework (2021-2027) under the Digital Europe Programme.
The Third EU Health programme ran from 2014 to 2020 and it is followed by the EU4Health programme, which is the largest of the EU health programmes, with a budget of €5.3 billion. 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.
- Publication date
- 28 February 2023
- European Health and Digital Executive Agency
- Programme Sector
- EU4HealthConnecting Europe Facility 1
- Digital technologyDigital transformationEU financingEUCancerPlanEUFundedHealthUnionInnovationMedical researchPharmaceutical industryPublic healthScientific research