The ERNs are one of the greatest achievements of the rare disease community in Europe. They are virtual networks connecting healthcare providers (HCPs), professionals, and patients across the EU/EEA and aim to tackle rare diseases and complex conditions requiring highly specialised treatment by pooling knowledge and resources and thereby improving diagnoses and treatment for patients with a “Share. Care. Cure.” approach. Using technology and telemedicine, the networks join up the information and expertise scattered across the EU, ensuring that information travels to the patient. The ERNs are not a time-limited project but an EU initiative based on the 2011 Directive on Patients’ Rights in Cross-border Healthcare, built on a robust policy and legal framework, and benefitting from previous work done by EU-funded projects, programmes, and networks over the decade before their launch. While there is still much work to do, the ‘birth’ of 24 ERNs has been a landmark moment in the history of European voluntary cooperation in the field of health with the potential to change millions of lives. They have already improved the healthcare management of patients with rare diseases and complex conditions throughout Europe by facilitating knowledge generation and sharing, care coordination, and exchanging of best practices concerning diagnosis, establishing new ways to reduce unfavourable outcomes for patients, improving and innovating the quality of care provided by expert healthcare professionals and their teams, and subsequently diminishing the cumulative cost for society. 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 on the networks. In March 2017, the first 24 ERNs were formally approved, accredited, and launched by the European Commission (EC) and the Board of Member States for ERNs (BoMS), involving more than 900 highly specialised healthcare units from over 300 HCPs. As required by the legislation, in 2018, HCPs in countries where an ERN has no Full Member were appointed as Affiliated Partners to work with the ERNs to expand the geographical coverage of the ERNs to involve all EU Member States. These HCPs are usually located in Member States with smaller populations that benefit the most from the knowledge transfer from interacting with the high-volume HCPs and expert clinicians in the networks. The UK withdrawal from the European Union took effect on 31 January 2020, with the transition period ending on 31 December 2020. This meant that UK HCPs ceased to be part of the ERNs. In January 2022, following a 2019 EC call for proposals for new members to join existing ERNs, the BoMS approved 620 new HCP members assessed by the EC, ERNs, and Independent Assessment Body, meaning the ERNs now include more than 1,400 healthcare units from around 400 HCPs across all 27 EU Member States and Norway. Full financial support for the ERNs has been agreed upon between the Member States, the European Parliament, and the EC, with all ERN grant management, funding, support actions, and innovations currently taken care of by the Health and Digital Executive Agency (HaDEA). Current funding is through the EU4Health Programme, which will be followed by the EC’s next health programme that, according to the EU vision on ERN Developments (ERN2030), will include funding calls for the 24 ERNs. In the future, collaboration with the medical industry may be another source of funding for the ERNS, and policy developments relating to this are under discussion by the EC, ERN Coordinators Group, and the BoMS. The Publications Office of the EU has published the 2023 edition of the official information brochure about the European Reference Networks, featuring an overview of ERN eUROGEN on page 24. You can click here to download the brochure, which is available in all Member States’ languages, as well as English, Norwegian, and Ukrainian. Please feel free to share the brochure wherever it would be helpful to do so.
European Reference Networks (ERNs)
Timeline
Funding
Information Brochure
European Reference Networks
