The EC allotted 18 million euros for health advancements in rare diseases
The European Commission initiated a new joint action (JARDIN) on March 8th, 2024, aimed at enhancing the diagnosis, treatment, and care for patients afflicted with rare diseases across the Union. The Joint Action brings together all EU Member States plus Norway and Ukraine and will address topics such as patient pathways and data management for rare diseases.
To realize this goal, it will incorporate European Reference Networks (ERNs) into national health systems, and ensure their long-term sustainability. ERNs function as virtual networks comprising highly specialized healthcare providers from various European countries, focusing on intricate or uncommon diseases and conditions necessitating specialized treatment or specialized knowledge and resources.
The Joint Action involves the development of national patient pathways connected to ERNs, the establishment of national reference networks that mirror and supplement ERNs, and the creation of structures tailored for undiagnosed patients. Its expected outcomes, such as recommendations, blueprints, and reports stemming from tangible pilot projects, are poised to enhance the quality of national strategies for rare diseases across EU Member States. It will also pave the way for even more effective, efficient, and sustainable cooperation in the future. JARDIN will therefore play a key policy role in the future development of ERNs and in the treatment of rare diseases.
To accomplish this objective, the dedication of civil society organizations, particularly rare disease patient associations spanning the EU, is crucial. Their participation has been indispensable in the advancements achieved thus far, and their input must persist in guiding the subsequent actions at the EU level. This ongoing dialogue, brought to fruition by the proposals of the EESC, underscores the importance of integrating their voices into the decision-making process.
This Joint Action (JA) will capitalize on the outcomes and existing frameworks of past initiatives while fostering synergies with ongoing projects. Notably, it will align with the EHDS Pilot 2, which aims to establish a federated infrastructure for health data integration, and the European Joint Programme on Rare Diseases (EJP RD), focusing on research and innovation in rare diseases. Additionally, it will leverage the European Rare Disease Registry Infrastructure (ERDRI), utilizing tools like ERDRI.spider for pseudonymization and ERDRI.mdr for metadata. The JA consortium will collaborate with relevant stakeholders to enhance ERDRI's capabilities, particularly in registering undiagnosed patients.
Moreover, it will leverage the outcomes and established frameworks of previous initiatives while fostering collaboration with ongoing projects. Key collaborations include ERICA, IRDiRC, OD4RD, Solve-RD, TEHDAS, and X-eHealth. Building on past endeavors like EUCERD and RD-Action, the JA will align with relevant network activities and EC efforts. Involving EU member states, Norway, and Ukraine, the JA aims for transparent, integrated efforts to develop adaptable resources for each country's specific needs, respecting healthcare autonomy. It will pilot concepts through various implementation steps, prioritizing equity and sustainability across European countries and healthcare systems.
Capacity building will be a cornerstone to ensure the proposed actions' success and integration into national RD plans and strategies, enhancing healthcare access and quality for all European citizens.
The project involves the 27 EU Member States, including Norway and Ukraine. It is coordinated by Austria and has total funding of 18.75 million euros, split in this way:
- 15 million from the EU4Health programme;
- 3.75 million from the Member States.
The approximate end date of the JARDIN project is set to December 31st, 2026.
“Our European Health Union is determined to deliver a better future for patients affected by rare diseases. Today we launch a new initiative to improve the diagnosis, treatment, and care of patients living with such conditions”, said Commissioner for Health and Food Safety, Stella Kyriakides. “The European Reference Networks are at the center of our work and this new action, by integrating these Networks into national health systems, will bring expertise closer to the patients and enable specialized knowledge to travel within the EU. When it comes to rare diseases, we can only change the lives of patients if we work ever more closely together.”