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March 06 2024

Rare Diseases in the EU: Joint Action shaping the future of ERNs

JARDIN Conference

The Conference on Rare Diseases in the EU: Joint Action shaping the future of ERNs, organized by the European Economic and Social Committee (EESC) and the Directorate-General for Health and Food Safety (DG SANTE) of the European Commission will take place on March 8th, 2024 in Brussels, Belgium.

This conference marks the culmination of the three-day launch of the Joint Action JARDIN, focusing on integrating European Reference Networks (ERNs) into national health systems. It aims to raise awareness of the Joint Action and rare diseases, and to engage a more wider network of stakeholders. This event builds on the momentum of the previous EESC conference on “Rare diseases and the European Reference Networks,” held in October 2023 in Bilbao, Spain, under the Spanish EU Council Presidency.

The Joint Action JARDIN, funded with a total of €18.75 million (€15 million from the EU and €3.75 million from Member States) over three years, represents a crucial step in the ERN initiative, which involves all EU Member States, Norway, and Ukraine. It 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 outcomes of JARDIN, including recommendations, blueprints and reports from concrete pilot implementations should eventually stimulate the development 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.

For more details on the conference, please visit the event website.

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