Tackling #RareDiseases, next step: integrating European Reference Networks into national health systems

Following last year’s rare diseases conference in Bilbao, the European Economic and Social Committee and the European Commission are joining forces to deal with rare diseases at European level.

Launching 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 – these were the objectives of the conference on Rare Diseases in the EU: Joint Action shaping the future of ERNs held in Brussels on 8 March 2024.

The conference was organised by the European Economic and Social Committee (EESC) in cooperation with the European Commission’s Directorate-General for Health and Food Safety (DG Sante).

EU health systems struggle to provide high-quality, cost-effective care when it comes to rare or low‑prevalence complex diseases which affect the daily lives of around 30 million Europeans.

That is why it is important to harness the potential of the European Reference Networks (ERNs), the virtual networks of healthcare providers across Europe which facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment and concentrated knowledge and resources.

The Joint Action JARDIN

The Joint Action JARDIN is a project that is 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 the 27 EU Member States, Norway and Ukraine. It is coordinated by Austria and has 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. JARDIN will therefore play a key policy role in the future development of ERNs and in the diagnosis, treatment and care of rare diseases.

To achieve this goal, the commitment of civil society organisations, in particular rare disease patient associations from across the EU, is key. Their involvement has been instrumental in the progress made so far, and their voice must continue to be heard in the next steps to be taken at EU level as part of the dialogue which has been become a reality thanks to the EESC’s proposals.

As far back as October 2023, at the Bilbao conference on Rare diseases and the European Reference Networks, the Committee succeeded in involving the main patient organisations from across the EU and called for a European action plan stepping up European cooperation between health systems to fight rare diseases and provide better diagnosis, treatment and care.

Source: European Economic and Social Committee | Press Releases (https://shorturl.at/jvLQX)