Since its inception, the ERNs have received continuous funding from the Commission. In addition to funding of the ERNs, the Commission has also funded auxiliary activities such as registries, expert exchange, clinical guidelines training, supporting the integration of the ERNs into national healthcare systems and implementing orphacodes.
In addition to funding coordination of the ERNs, the Commission has also funded auxiliary activities such as as registries, expert exchange, clinical guidelines training, supporting the integration of the ERNs into national healthcare systems and implementing orphacodes.
Joint Action JARDIN
In March 2024, the Commission launched a new joint action (JARDIN) to improve the diagnosis, treatment, and care of patients with rare diseases throughout the Union. To achieve this objective, it will integrate European Reference Networks (ERNs) into national health systems.
The Joint Action brings together all EU Member States, Norway and Ukraine and will address patient pathways and data management for rare diseases.
It will also help for even more effective, efficient, and sustainable cooperation in the future.
For 2024-2027, the action will receive €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.
These grants will cover 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.
Orphanet is a digital platform gathers and improves knowledge on rare diseases to improve the diagnosis, care and treatment of patients with rare diseases.
Orphanet has gradually grown to a Consortium of 40 countries, within Europe and across the globe.
Orphanet also maintains the Orphanet rare disease nomenclature (ORPHAcode, also supported by the European Commission), essential for rare diseases in health and research information systems.
The last grants to Orphanet, totalling EUR 4.4 million, were in 2021 and 2022 and will cover until 2025.