What it takes to get the ERNs to the next level
May 2025Rare diseases are, by nature, complex and often geographically scattered. No single country can hold all the expertise needed to provide optimal care for every rare condition. But through the European Reference Networks (ERNs), the EU has supported an extraordinary example of how cross-border collaboration in healthcare can make sense – and make lives better.
The ERNs unite healthcare providers and patient representatives across borders to improve healthcare and the lives of people living with a rare or complex condition taking into consideration their needs and responding to them. They are a cornerstone of the European policy on rare diseases to ensure equal and timely access to specialised healthcare.
As we mark Europe Day 2025, it is timely to reflect on the ERNs’ journey so far – and what comes next. To help guide this next chapter, EURORDIS-Rare Diseases Europe is today publishing key follow-up actions to consolidate and enhance the Networks, based on the recommendations included in the Commission’s five-year evaluation report of the ERNs.
The Commission’s five-year evaluation of the ERNs, published in November 2024, affirmed what Europe’s rare disease community has long believed: the ERNs work – yet their full potential is still ahead of us.
A proven model of European collaboration
The Commission’s evaluation results spoke volumes, and were welcomed by EURORDIS upon their release. All 24 ERNs were rated satisfactory, and 87.68% of participating healthcare providers met the same benchmark. According to the Commission’s summary, more than 92% of ERNs were assessed as “Excellent” or “Very Good” in achieving their objectives.
These figures are a proud achievement for the rare disease community. Over the past five years, the ERNs have delivered real value: creating opportunities for clinicians to learn and collaborate, developing and disseminating clinical guidelines and other clinical decision support tools, raising awareness on rare diseases and sharing expertise across borders – a tangible expression of European solidarity in action.
The ERNs have also laid the groundwork for advancing research and data-sharing, helping to establish rare disease registries to support innovation in medical practice, policy and research.
But the successes recognised by the evaluation are not a finish line – they are a springboard. To realise the ERNs’ full potential, the report identifies areas of improvement to strengthen the system.
Building on strength: A vision for the future
The evaluation highlights not only the ERNs’ achievements, but also what is needed to strengthen them for the long term. That is why today, EURORDIS is releasing a dedicated paper proposing concrete follow-up actions in five key areas:
- Formalising patient partnership
- Securing sustainable and mixed funding
- Materialising integration into national health systems
- Measuring outcomes of care and clinical performance
- Implementing a continuous quality improvement model
These are not abstract calls, but practical, experience-based proposals. They are designed to ensure that by 2027 – ten years since the ERNs were launched – we can point not only to outputs, but to measurable improvements in the healthcare and impact in the lives of the 30 million people living with rare diseases in Europe.
Anchoring the needs of people living with a rare disease at the centre
From the very beginning, patient representatives have been partners in the ERNs’ development – bringing forward the community needs, advising on priorities, and co-creating standards of care, clinical practice guidelines and other decision support tools.
Yet as highlighted in the evaluation and echoed by EURORDIS, this partnership is still too often dependent on informal goodwill. All ERNs have embedded patient representatives into their governance structures, but patient representatives lack a formal recognition as ERN members in the legislation and the collaboration with clinicians is not always well supported and assessed.
EURORDIS proposes a vision where, by 2027, every ERN operates a mature, well-supported patient partnership model. We are contributing tools to make this a reality, including adapted evaluation surveys for monitoring the implementation and impact of patient partnership. We have also created a Patient Partnership Hub to provide access to guidance, training resources, and tools.
But success will require commitment – from ERN Coordinators, national authorities, and the European Commission. Patient partnership in the ERNs must be formalised, better supported, anchored in common values and principles and systematised, not incidental.
Sustainable funding and deeper integration
To sustain and integrate the ERNs in national health systems, the right funding system that allows leveraging and combining multiple funding sources must be in place.
EURORDIS is calling for the 2028–2035 EU Multiannual Financial Framework to guarantee stable EU funding. To ensure that ERNs can continue delivering on their mission the next programming period should earmark an envelope of EUR 182 million to cover the ERNs operational expenses for coordination and fund core activities such as training and education activities, the development or revision of clinical practice guidelines and other clinical decision-support tools, the delivery of virtual consultations and networking activities. Additional non-competitive funding should be allocated to ERNs registries, to enable large scale data collection and analysis as well as their full participation in the EHDS.
At the same time, Member States must increase their support to the ERNs system. This includes both channelling financial resources to Expert Centres and taking concrete steps to integrate ERNs into national health systems. The Networks should not remain islands of excellence – they must become bridges to equity. By 2027, every EU country should have begun implementing an ERN integration strategy, with governance mechanisms, infrastructure, resources and action plans in place.
EURORDIS also supports the co-development of a common legal framework and model to operationalise ethical and transparent collaboration between ERNs and industry – particularly in research. This can unlock new partnerships, while safeguarding public trust and ensuring that ERNs retain control over how funding is used.
Measuring what matters
The evaluation calls for a decisive shift in how we assess the ERNs’ impact – from counting outputs to capturing outcomes and implementing a quality improvement system in the ERNs to allow centres to compare, reflect, and improve – collectively raising the bar on care quality and consistency.
In 2027 ERNs and health authorities should be able to provide evidence on the impact of an integrated ERN system. Have the Networks contributed to achieve improvements in quality of care or to reduce inequities in access to timely and adequate healthcare services? Have they contributed to reduce time-to-diagnosis? To what extent is the ERNs system contributing to improving the health outcomes of people living with a rare or complex condition? What is the experience of patients with the care delivered in rare disease Expert Centres? Has the clinical performance of Expert Centres affiliated to an ERN improved, and to what extent can these improvements be attributed to their participation in the Network? How have national health systems leveraged the ERNs to improve their capacities to diagnose and treat rare and complex conditions?
The next evaluation of the ERNs in 2027 should shed some light on these questions – to address them ERNs and healthcare providers must collect and analyse data on clinical performance, health outcomes and patient-reported experience, as well as tracking the use and implementation of ERNs tools and guidance to support clinical decision-making at local level. Additionally, health systems must improve their performance measurement for people with rare and complex conditions and monitor how the Networks are contributing to improving the systems’ capacities to diagnose, manage and treat these conditions. Just as national health systems must facilitate the integration of the Networks, they should adopt a systems approach to measure their impact.
The European way in practice
On this Europe Day, we celebrate more than a policy initiative. We celebrate a living embodiment of what EU cooperation and solidarity can achieve when it puts innovation into practice – and people at the centre.
The ERNs system is ready to deliver innovation. But with political will, adequate and sustained investment, and steadfast commitment to improving health outcomes and reducing inequities through meaningful patient partnership – the system will change and transform the lives of 30 million people living with complex and rare conditions.
By 2027, we want to see the ERNs not just sustained, but flourishing. A model for Europe, by Europe – one that breaks down borders, spreads expertise, and delivers better care for those living with rare and complex conditions.
Let’s make that vision a reality.
Ines Hernando, ERN and Healthcare Director, EURORDIS-Rare Diseases Europe