Since their inception, the ERNs have received continuous funding from the Commission. In addition to funding the coordination of the ERNs, the Commission has also funded auxiliary activities such as registries, an expert exchange programme, a training on the methodology to be used to develop clinical guidelines, a joint action supporting the integration of the ERNs into national healthcare systems and orphacodes.
Joint Action JARDIN
In March 2024, the Commission launched a new joint action (JARDIN) to improve the sustainability of the European Reference Networks by integrating them into national health systems.
The Joint Action brings together all EU Member States, Norway and Ukraine and will address also patient pathways, data management and development of national networks for rare diseases.
For 2024-2027, the action receives €15 million from the EU4Health programme and €3.75 million from Member States.
ERNs grants
The Commission has been providing funding since 2017 for the operation and coordination of the ERNs. In 2023, the Commission launched another wave of funding for the ERNs that covers 4-years (2023-2027), with a total budget of EUR 77.4 million for the 24 Networks, alongside 24 impact indicators to help measure their work.
These are non-competitive calls with 100% Commission funding.
Orphanet
Orphanet was established in France by the INSERM (French National Institute for Health and Medical Research) in 1997. Since 2000, the initiative became a European endeavour supported by grants from the European Commission.
The last grants to Orphanet, totalling EUR 4.4 million, were in 2021 and 2022 and will cover until 2025.
During the period 2021-2027, the above grants are funded by the EU4Health programme, and implemented by the European Health and Digital Executive Agency.
