On 8 March 2024, the European Economic and Social Committee and the European Commission held a conference on Rare Diseases in the EU: Joint Action shaping the future of ERNs (JARDIN kick off meeting) in Brussels. The goal was to launch a joint European initiative on rare diseases to integrate the European Reference Networks (ERNs) into national health systems, while building a common front among EU institutions, European countries, civil society organisations, patient associations, scientists, practitioners and hospital managers.

EU health systems struggle to provide high-quality, cost-effective care when it comes to rare or low prevalence complex diseases that affect the daily lives of around 30 million Europeans. This is why it is important to harness the potential of the ERNs, the virtual networks of healthcare providers across Europe which facilitate discussions on complex or rare diseases and conditions that require highly specialised treatment and concentrated knowledge and resources.

The Joint Action JARDIN is a project integrating the ERNs into national health systems and working to make them sustainable. It develops national patient pathways linked to ERNs, national reference networks mirroring and complementing the ERNs, and structures for undiagnosed patients.

The project involves 27 EU Member States, Norway and Ukraine. It is coordinated by Austria and has a total funding of EUR 18.75 million (EUR 15 million from the EU and EUR 3.75 million from the Member States) for a period of three years. The results expected from JARDIN, including recommendations, blueprints and reports from concrete pilot projects, should lead to better national plans for rare diseases in EU Member States. (mp)