European Reference Networks (ERNs) towards providing a better future

Rare disease patients across Europe publish their vision of a mature ERN system

16 December 2020, Brussels – EURORDIS calls on European Institutions and Member States to take the necessary steps now to take European Reference Networks to the next level in order to provide a better future for people living with a rare disease or complex condition.

EURORDIS-Rare Diseases Europe, alongside its Member Organisations and ERN ePAG (European Patient Advocacy Groups) patient representatives, urge leaders in Europe – at Member State and European Union level – to take action today to build a mature European Reference Network (ERN) system by 2030.

In a new paper, Recommendations for a Mature European Reference Network System by 2030, EURORDIS sets out an ambitious vision for an ERN system over the next decade that leaves no person living with a rare disease in uncertainty regarding their diagnosis, care and treatment.

This paper comes at an extremely important time, when the long-term EU health budget, the EU4Health programme, has been signed off by the EU institutions. Throughout the EU budget process, EURORDIS has called on decision-makers to include sufficient funding for the consolidation and further development of the ERNs. As we find ourselves at a tipping point for EU cooperation in health, the recommendations in this paper offer a stepwise approach to achieve by 2030 a European-wide healthcare and research structure that will effectively contribute to improve the quality of life of the people living with a rare disease or complex condition in Europe. 

Emphasis is put on the pivotal role of national and regional health authorities to take political ownership of the European Reference Networks structure. Each country must clearly define how the ERNs will complement their own health systems, while establishing processes to adopt and use the knowledge assets curated and created by the Networks.

ERNs are the result of a 15-year multiskaholder policy dialogue and hold the potential to become a benchmark of successful European collaboration in healthcare, driving improvements in health outcomes as healthcare systems leverage on the collective expertise and knowledge of the centres of expertise and patient organisations involved in these Networks. But there is still work ahead to provide a home for all rare diseases, where experts are recognised, visible and accessible, and where expertise travels, not the patient.

This vision for the next decade, developed by EURORDIS, its Member Organisations and ERN ePAG patient advocates, builds on the needs of the patient community as well as the principles of solidarity and inclusiveness, to drive further the shared knowledge, expertise, care and collaborative research that the Networks can offer. 

Professor Wout Feitz, European Reference Network eUROGEN Coordinator said:

"The ERNs are open for business and ready to strengthen to ensure high quality and equitable access to healthcare for people with rare diseases and complex conditions across Europe.

The recommendations in this report will be critical in supporting the ERN Working Group on Monitoring and the ERN Coordinators to tackle key strategic issues at Network level.  Moving forward, the top priorities have to be the facilitation of international cooperation and, in particular, ensuring there are clear referral pathways from countries into the ERNs." 

A vision for a mature European Reference Network system

Substantial progress over the next 10 years is required in many fronts if the ERNs are to deliver on their full potential; this transformational change can only happen if sufficient funding and political will is combined at all necessary levels - European, national, and regional. 

The 33recommendations featured in the paper address actions needed in the four following domains: 

  • Identifying the rare disease patient population needs;
  • Recognising how healthcare systems meet the needs of the people living with a rare or complex condition, with particular focus on action needed at a national to support rare disease Centres of Expertise
  • Defining a fit for purpose structure and scope of the ERNs, to ensure that each Network is set up to deliver for patients; and, 
  • Progressing towards mature collaborative activities in the areas of care, knowledge sharing, training and education and research.

A focus of the recommendations falls on integrating ERNs and enhancing the capacities of national health systems so that patients can get a timely diagnosis and treatment in their own country where this is possible. Nationally-anchored ERNs will contribute to reducing existing inequalities in access to high quality care.

What value do European Reference Networks bring for patients?

Real progress on care and research for rare and complex conditions is heavily dependent on our ability to pool expertise and data from various sources across borders. 

Anita Kienesberger, ePAG advocate with ERN PaedCan, commented:

“These recommendations and vision mark the great progress that has been made, at pace, in efforts to pool scarce expertise in rare and complex diseases so that patients across Europe are not subjected to a quality of care defined by where they live.

It also brings hope to patients, whose needs sit central to this vision. If realised, the impact for patients across Europe cannot be underestimated. We are proud to have taken part in developing this vision and urge all stakeholders to come together, for people living with a rare disease, as we take these next leaps forward!”

Health data, coupled with active patient organisations and connected clinical and research networks, is the recipe to transform care delivery and drive research and innovation. Today the ERNs bring together these three elements, representing a unique opportunity to improve health outcomes and the lives of people living with a complex or rare condition in Europe. 

EURORDIS now calls for patient organisations and experts to unify within the Networks, and for the Member States to nourish them and  embrace the potential that this new structure has to complement their national health systems.


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Page created: 16/12/2020
Page last updated: 28/01/2021
Голос пациентов с редкими заболеваниями в Европе The voice of rare disease patients in EuropeEURORDIS Сеть организаций, представляющих интересы пациентов с редкими заболеваниями их разных стран мираRare Disease International Социальная сеть RareConnect предоставляет пациентам, их семьям и специалистам многоязычную платформу для обмена информацией и опытом RareConnect Программа Rare Barometer — это инициатива EURORDIS, направленная на проведение исследований по преобразованию опыта пациентов с редкими заболеваниями в цифры и факты, которыми можно поделиться с ответственными руководителями. Rare Barometer День больных редкими заболеваниями – международная кампания по привлечению внимания к проблеме редких заболеваний, которая по инициативе EURORDIS ежегодно проводится в последний день февраляRare Disease Day Приняв участие в Европейской конференции по редким заболеваниям и орфанным препаратам (EUCERD), которая по инициативе EURORDIS проводится каждые два года, вы получите возможность побывать на самом представительном европейском форуме по проблемам редких заболеваний.European Conference on Rare Diseases