ADVOCACY

JARDIN – The new EU Joint action

EU Joint Action on Integrating ERNs* into National Health Systems (JARDIN)

*ERN: The key European network leveraging diagnosis, research, and treatment for rare diseases

It was at the formal kick-off meeting in Brussels in March 2024 where the purpose and ambitions of JARDIN were further detailed, and where the European Commissioner for Health and Food Safety, Stella Kyriakides, declared: “When it comes to rare diseases, we can only change the lives of patients if we work ever more closely together.”

JARDIN & ERNs

We were 3 representatives from OIFE who attended parts of the kick off for the JARDIN project on March 8. JARDIN stands for Joint Action on integrating the European Reference Networks (ERNs) into national healthcare systems. This is an important project, because if national healthcare systems, hospitals and hospital regions are not set up (and funded nationally) to work with the ERNs, the ERNs will not have true value. Only if proper care pathways are set up – people with rare conditions in X & Y country will benefit from expert advice from an ERN.

A practical example

If a person with OI in Latvia or Sweden, needs a very specialized or complex treatment or surgery, it should be possible for the treating physicians locally, to ask their national experts for advice. If the national experts don’t have the knowledge it should be easy and accessible for them to ask for virtual advice from all the experts in ERN BOND – what to do with this patient. In the most extreme cases, it should be possible for this person to travel to another country to have the needed surgery (cross border healthcare).

In THEORY

In theory this is possible already today, but there are many obstacles for it to work smoothly. And when it comes to data exchange between countries and registries, this is even more complex and difficult. We therefore hope JARDIN will be an important step in the right direction of implementing ERNs into national healthcare systems – to secure true benefit for patients with rare conditions who need expert advice.

Still not entirely sure what ERN BOND is and what they are doing? Then we recommend the article called ERN BOND: The key European network leveraging diagnosis, research, and treatment for rare bone conditions

 

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