JARDIN: A new Joint Action to shape the future of ERNs
From 6-8 March 2024, the kick-off meeting for the new EU4Health Joint Action on Integration of European Reference Networks (ERNs) into National Healthcare Systems (JARDIN) was organised in Brussels by the JARDIN coordination team in cooperation with the European Economic and Social Committee (EESC) and the European Commission’s DG SANTE.
The three-year project aims to strengthen the ERN infrastructure and improve the response to the challenges faced by Europeans living with a rare disease by working to seamlessly integrate the Networks into national health systems. JARDIN will undertake activities to support health authorities in creating national integration roadmaps, as well as offering concrete recommendations on topics such as patient pathways, national reference networks, processes for undiagnosed patients, quality enhancement for centres of expertise, referral mechanisms, and health data interoperability. It will build on recommendations put forth by EURORDIS in 2018, as well as the recommendations of the Rare2030 Foresight Study.
The third day of the kick-off included a political conference organised by the EESC titled Rare Diseases in the EU: Joint Action shaping the future of ERNs. Following the rare disease conference held last Fall in Bilbao, it showcased the commitment of EU institutions, Member States, patient advocates, and other stakeholders towards successfully integrating ERNs into national systems and advancing broader EU rare disease policies.
The conference featured prominent speakers from EU institutions such as Stella Kyriakides, EU Commissioner for Health and Food Safety and Oliver Röpke, EESC President; along with national decision-makers, representatives from patient organisations, and more. They highlighted the importance of ERNs in facilitating appropriate, timely care for people living with a rare disease, as well as the need for European cooperation in order for JARDIN to be successful.
“In the European Health Union, nobody should be left behind, especially our fellow EU citizens fighting rare diseases. That means that we need robust EU cooperation so that everyone has access to timely diagnosis, affordable treatment and care – no matter where they live and no matter their disease…Today’s launch of a new Joint Action to integrate the European Reference Networks into national health systems is another testament of our unwavering commitment to improve the lives of those living with rare diseases.”
-Stella Kyriakides, European Commissioner for Health and Food Safety
Beyond optimism and a collective commitment to improving the lives of Europeans living with a rare disease, a key theme of the conference was the role that the quality of implementation at all levels has to play in the success of JARDIN. Both EU and national institutions will need to follow through on their commitments in order to effectively integrate the ERNs into national healthcare systems.
