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Rare Disease Day 2026: how the EU4Health Joint Action JARDIN is supporting the work of the European Reference Networks (ERNs)
March 2nd, 2026
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- ERNs
- Rare Disease Day
On Rare Disease Day, HaDEA spoke with representatives of the JARDIN Joint Action, Prof. Till Voigtländer, coordinator of JARDIN and associate professor of neurobiology and neurosciences at the Medical University of Vienna, and Dr Ursula Unterberger, co-lead of JARDIN work package 7, from the University Hospital Würzburg. They explained how the Joint Action is strengthening the work of European Reference Networks (ERNs) by supporting their better integration into healthcare systems in Europe.
ERNs are multinational networks of highly specialised healthcare providers across Europe in thematically coherent medical domains, addressing rare or low-prevalence complex diseases requiring exceptional concentration of expertise and resources.
What is the aim of the JARDIN Joint Action and how does it complement the existing grants to European Reference Networks (ERN)?
The aim of JARDIN is to assist participating countries in any actions regarding the integration of ERNs into healthcare systems, to increase the benefits that ERNs already bring to people living with rare and complex diseases. The recommendations developed by JARDIN will provide guidance similar to a series of checklists. The recommendations will be tested through pilot implementations, typically in several countries, with a duration of up to one year. These real-life insights will further increase their usefulness, especially since the principles are tested in countries with different healthcare systems, population sizes and several other characteristics.
Although it is a challenge to take into account the often profoundly different situations in participating countries, the advantages of having a common approach are obvious: JARDIN unites a large number of experts on policies for rare and complex diseases across Europe, brings together their expertise and follows common principles with regard to procedures, such as quality assurance of documents. Furthermore, JARDIN provides a unique opportunity to learn from each other, create synergies and start longstanding collaborations.
JARDIN builds on the work of the European Reference Networks (ERNs), which already connect rare disease experts across Europe. How does JARDIN make sure that the knowledge developed by ERNs is shared, reused and turned into better diagnosis and care across different national health systems?
What helps is the special structure of the Joint Action. The consortium is composed of one competent authority from each participating country, which is endorsed by their Ministry of Health and therefore guarantees a strong link with the national health authorities. This increases the likelihood of an actual implementation of measures, through participative processes and targeted knowledge transfer. The competent authorities may be complemented by one or more affiliated entities per country, adding up to more than 50 partners from all EU countries and Norway, and bringing even more expertise to the table. This creates an excellent environment for capacity-building and peer learning. JARDIN develops this huge momentum to improve even further the ERN system, which already represents a unique pan-European achievement.
It is also worth noting that the Joint Action was preceded by a thorough needs analysis by different European institutions and organisations, in different contexts, all concluding that the integration of the ERNs into national healthcare systems was a weak yet crucial point crucial for the functioning of the ERNs. The Board of Member States (BoMS), the governing body of the ERNs, established a dedicated “working group on ERN integration into national health systems” as early as 2018. In its 2019 statement, the BoMS listed the most prominent aspects that would have to be taken into account to achieve ERN integration, such as the creation of well-defined patient pathways and clear referral systems to the ERNs, clear strategies for communicating and disseminating information about and from ERNs, but also strengthening the coordinating role of national authorities.
A key challenge is shortening the “diagnostic odyssey”. How can better coordination, shared tools, or common approaches developed by JARDIN make a real difference for patients and families?
One of the key measures to shortening the timing for diagnoses are organised pathways. If well implemented, organised pathways have the potential of turning “diagnostic odysseys” into a system of “highways to diagnosis”, linking all steps of the diagnostic journey, across borders and to the best specialised centers in Europe. The most challenging patient cases are then discussed within an ERN via the European teleconsultation system (CPMS 2.0), which has been tremendously refined for its second version.
Using an innovative approach, structures for long-term undiagnosed patients with multi-systemic conditions will be created and piloted in the framework of JARDIN, for instance in the form of an ERN-based undiagnosed disease programme. There will also be recommendations for specialised services for undiagnosed patients in EU countries, including organisations supporting patients. Eventually, we want to have a system that guarantees that everyone gets exactly the service and the amount of attention they need.
Rare diseases are complex, and their expertise is not equally available across Europe. How close are we to a situation where a patient can access the same level of rare disease expertise, regardless of where they live?
If everything was already working perfectly fine, there would be no need for a project like JARDIN. We have definitely come a long way since the entry into force of the Cross-Border-Healthcare Directive, which allows citizens to access health support in any EU country, and the launch of the ERNs in 2017. Health policies are the responsibility of EU countries and the EU can provide complementary actions. In light of this, the ERNs are truly an outstanding achievement.
Certain aspects should now be addressed for the ERNs to unfold their full potential. For example, the development of a second, improved version of the Clinical Patient Management System (CPMS) will hopefully be an incentive for more international case discussions.
Moreover, the EU’s support for Joint Actions such as JARDIN, that bring EU countries together and develop clear, implementable solutions, is key to promoting more equity across Europe.
This project is not an endpoint, but part of a broader European journey on rare diseases. How will JARDIN help set up the foundations for what comes next, and why is this important for people living with rare diseases across Europe?
The recommendations as well as other documents and tools developed by JARDIN cover a perspective of 7 to 10 years. This gives EU countries enough time to implement the fundamental changes that are needed to improve the lives of people living with rare diseases. An important factor is also that countries and experts continue to work together, even after the end of the project.
Further EU4Health support to ERNs
HaDEA is currently also managing several key contracts in the field of rare diseases, with a particular focus on supporting the ERNs. Their aim is to strengthen the ERNs’ system, in terms of raising awareness as well as improving the tools used to assess, monitor and improve performance.
More specifically, these contracts are working to:
- Raise awareness of patients’ rights in cross-border healthcare and improve understanding of the functioning of ERNs;
- Provide an independent assessment of the status of ERN registries, the registries of rare diseases on which ERNs work;
- Revising and improving the AMEQUIS system, which is the integrated framework used to assess and monitor the ERNs.
Related links
An in-depth look at how the European Reference Networks (ERNs) are tackling rare diseases
Discover Horizon Europe projects advancing research and innovation for rare diseases
Background
EU4Health is the fourth and largest of the EU health programmes. The EU4Health programme goes beyond an ambitious response to the COVID-19 crisis to address the resilience of European healthcare systems. The programme provides funding to national authorities, health organisations and other bodies through grants and public procurement, contributing to a healthier Europe. HaDEA manages the vast majority of the total EU4Health budget and implements the programme by managing calls for proposals and calls for tenders from 2021 to 2027.
