EESC: Rare Diseases in the EU: Joint Action shaping the future of ERNs, 8 March 2024

The conference will conclude the three-day Joint Action JARDIN kick-off meeting on the integration of European Reference Networks (ERNs) into national health systems. It aims to raise the awareness of the Joint Action and rare diseases in general and reach a wider community of stakeholders. Moreover, it follows up the EESC Conference on “Rare diseases and the European Reference Networks” that was organised under the auspices of the Spanish Presidency of the EU Council in October 2023 in Bilbao, Spain.

The Joint Action JARDIN has total funding of €18.75 million (€15 million from the EU and €3.75 million from the Member States) for a period of three years. It is an important element of the ERN file involving all EU Member States, Norway and Ukraine, and aims to integrate ERNs into national health systems and pave the way for their future sustainability, for example by developing national patient pathways linked to ERNs, developing national reference networks mirroring and complementing the ERNs, and developing structures for undiagnosed patients. The expected results from JARDIN, including recommendations, blueprints and reports from concrete pilot implementations should eventually stimulate the elaboration of improved national plans for rare diseases in EU Member States. JARDIN will therefore play a key policy role in the future development of ERNs and in the treatment of rare diseases.