Commission launches joint action with €18 million funding to improve the diagnosis, treatment and care of patients with rare diseases

Today, the Commission has launched a new joint action (JARDIN) to improve the diagnosis, treatment, and care of patients with rare diseases throughout the Union. To achieve this objective, it will integrate European Reference Networks (ERNs) into national health systems: ERNs are virtual networks of highly specialised healthcare providers from across Europe, addressing complex or rare diseases and conditions that require highly specialised treatment or specific knowledge and resources.

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. It will also pave the way for even more effective, efficient, and sustainable cooperation in the future. For the 2024-2027 period, the action will receive €15 million from the EU4Health programme and €3.75 million from Member States.

Stella Kyriakides, Commissioner for Health and Food Safety, said: “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. The European Reference Networks are at the centre of our work and this new action, by integrating these Networks into national health systems, will bring expertise closer to the patients and enable specialised 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.”