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The European Reference Networks: A vital, sensible, and successful investment 

October 2023

Since their establishment in 2017, the European Reference Networks (ERNs) have exemplified how EU-level solutions can circumvent national policy challenges. 

These 24 ERNs, each specialising in a rare or complex disease area and primarily funded by the EU budget, have been pioneers in cross-border healthcare innovation, transforming EU cooperation and solidarity in healthcare into tangible benefits for people living with rare or complex conditions. 

Last week in Bilbao, Spain, at the Conference on Rare Diseases and the European Reference Networks, held by the European Economic and Social Committee (EESC) with the support from the Spanish Presidency of the EU Council, EU policymakers lauded the ERNs for their role in tackling the unique challenges posed by rare and complex medical conditions, which are often compounded by limited expertise and scarce data. 

Among the EU representatives in Bilbao who commended the ERNs were Stella Kyriakides, European Commissioner for Health and Food Safety, and Donata Meroni of DG SANTE, who has been overseeing the Commission’s five-year evaluation of the ERNs

Providing an update on the concluding evaluation of the ERNs, Meroni confirmed that all 24 ERNs have been deemed fit-for-purpose, with each receiving a satisfactory result – an outcome of which Meroni described the Commission as being “very proud”. 

Earlier this month, in anticipation of the Bilbao conference, EURORDIS and the 24 ERNs jointly composed an open letter to EU policymakers, highlighting the ERNs’ achievements and insisting on key recommendations for their consolidation and continued expansion. 

Today, we delve into the accomplishments thus far of the ERNs in breaking down barriers to specialised care, and we discuss why and how EU institutions and Member States should maintain their steadfast support for these vital networks. 

Breaking down barriers to specialised care 

In 2017, the year the ERNs were established, 11-year-old Anna, residing with her family in Italy, faced a daunting medical challenge. She was diagnosed with a complex arteriovenous fistula of the lung, an abnormal connection between an artery and a vein in the lung caused by hereditary haemorrhagic telangiectasia (HHT). 

However, medical evaluations for rare conditions like HHT, which affects just one in 5,000-8,000 people, are often hampered by limited expertise within the borders of one’s own nation. 

Fortunately for Anna, clinicians were able to collaborate with VASCERN, the ERN for vascular conditions, to evaluate her case. Upon the evaluation, she was booked in for an embolisation surgery in Milan.  

The surgery was a resounding success. Anna not only made a strong recovery but also displayed remarkable resilience by participating in an uphill running competition shortly after the operation. 

Anna is not the only rare disease patient whose life has been improved by ERNs. 

Clinicians, alike patients, are grateful for the avenues to medical resolutions that ERNs provide. Anne Koy, a paediatrician from Cologne, Germany, recently shared with us how an expert panel of ERN-RND, the ERN for rare neurological diseases, “assisted me last year with my decision on how to treat two of my dystonia patients best.” 

Koy had consulted the panel on whether deep brain simulation (DBS) – a practice which involves a device that sends controlled electrical signals to specific areas of the brain – should be used to treat a patient. 

“Following the treatment advice, symptoms of one patient moderately improved,” Koy recounts. 

In the past six years, ERN experts have conducted more than 3,450 virtual cross-border consultations for diagnosis, treatment, and disease management. This approach has allowed professionals like Koy to deliver top-tier healthcare, and patients like Anna to receive it. 

Integrating the networks at the national level 

ERNs will achieve many more of these success stories if they continue to receive the support they deserve. 

One significant step toward these success stories will be the Joint Action on Integration (JARDIN), which is aiming to embed the ERNs into national health systems. 

“The general practitioner, the person in the hospital, these are the people who have to know more about [the ERNs],” said Till Voigtländer, coordinator of the Joint Action, in Bilbao. 

This will be no small task. Fully integrating the ERNs into national health systems will require for example, the establishment of national reference networks, or other national structures like ERN National Coordination Hubs, that can themselves be plugged into the European networks. This will require coordinated efforts and funding, not only from the European Commission, but all Member States. 

As explained by Voigtländer,  some EU countries have centralised health systems, while others have decentralised systems with competencies devolved to the regions and sometimes the local level. The Joint Action will need to serve all types of health systems, and this will be no small mission. 

The need for lasting commitments 

The European Reference Networks (ERNs) have proven to be a vital, sensible, and successful investment in improving the lives of individuals facing rare and complex medical conditions, but it’s not just through allowing expertise to cross borders that they bring value. The ERNs have been allowing for the attainment of new expertise and the generation of new knowledge. 

By gathering Europe’s specialists on one virtual platform, promoting the secure sharing of health data across borders, and identifying eligible patients for clinical trials, ERNs contribute to the advancement of knowledge and medical options for rare diseases – the vast majority of which currently have no treatment. 

However, it must be stressed that ERNs, for all their promise, must form only one key piece of a broader goals-based European Action Plan for Rare Diseases that spans the full breadth of policy areas. This Action Plan must integrate both EU and national level actions, and address all of our community’s unmet needs. Last week’s conference showed that the cross-country, cross-institutional consensus on the need for this Action Plan remains as strong as ever. 

As Yann Le Cam, our Chief Executive Officer, stated in Bilbao: 

“What are we waiting for?” 

“It is high time for a comprehensive public health strategy for rare diseases.” 

Julien Poulain, Communications Manager 

Felix Allan, Communications Intern