European Reference Networks

What are the European Reference Networks and why are they a priority for people living with a rare disease?

Finding the right expert for a rare disease and accessing care remains a challenge for many of the 30 million people living with a rare disease in Europe. Often the only doctor who has expertise in their disease is located in a different country.

To address these challenges, the EU created the European Reference Networks (ERNs). An ERN is a clinical network that connects doctors, patient representatives and researchers virtually across borders, so that expertise travels rather than the patient.

They facilitate both the dissemination and exchange of knowledge and experience (when clinicians provide specialist advice and review cases, develop new clinical practice guidelines, or run training) and the generation of new knowledge (when clinicians share clinical outcomes and conduct research studies).

Through the ERNs, a doctor can now access existing expert knowledge from another country on a patient’s disease. To review a patient’s diagnosis and treatment, ERN coordinators convene ‘virtual’ advisory panels of medical specialists across different disciplines, using a dedicated IT platform.

ERNs are also gradually developing their research capacities building Clinical Research Networks within each ERN to increase their collaborative activities in the area of clinical research.

“There are only 150 cases of Ring-20 syndrome and they are spread across the world. The European Reference Networks have created a structure that means patients in Europe can access highly specialised expertise on their disease, no matter where the doctor is.“

Allison Watson, ePAG Patient Advocate in the ERN EpiCARE.

EURORDIS objectives in the area of ERN

Advocate for timely and equal access to high-quality care for people living with a rare disease, and therefore the advancement of ERNs, on the EU health agenda

Improve health outcomes for people with rare diseases by increasing the delivery of evidence-based highly specialised healthcare, and through the integration of ERNs into national health systems

Advocate for and facilitate the engagement of people living with a rare disease in the governance, strategic and operational delivery of the Networks

Empower patients with the knowledge and skills they need to be effective representatives when engaging with the clinicians in Networks’ collaborative activities

Patient involvement and representation in the ERNs

Bringing together 300+ patient representatives from 28 European countries, the European Patient Advocacy Groups (ePAGs) represent the patient voice in the European Reference Networks (ERNs).

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Explore 24 European Reference Networks

ERN BOND (Bone disorders)

ERN CRANIO (Craniofacial anomalies and ENT disorders)

Endo-ERN (Endocrine conditions)

ERN EpiCARE (Epilepsies)

ERKNet (Kidney diseases)

ERN-RND (Neurological diseases)

ERNICA (Inherited and congenital anomalies)

ERN LUNG (Respiratory diseases)

ERN Skin (Skin disorders)

ERN EURACAN (Adult cancers)

ERN EuroBloodNet (Haematological diseases)

ERN eUROGEN (Urogenital diseases and conditions)

ERN EURO-NMD (Neuromuscular diseases)

ERN EYE (Eye diseases)

ERN GENTURIS (Genetic tumour risk syndromes)

ERN GUARD-HEART (Diseases of the heart)

ERN ITHACA (Congenital malformations and rare intellectual disability)

MetabERN (Hereditary metabolic disorders)

ERN PaedCan (Paediatric cancer (haemato-oncology))

ERN RARE-LIVER (Hepatological diseases)

ERN ReCONNET (Connective tissue and musculoskeletal diseases)

ERN RITA (Immunodeficiency, autoinflammatory and autoimmune diseases)

ERN TRANSPLANT-CHILD (Transplantation in Children)

VASCERN (Rare multisystemic vascular diseases)

Rare on Air

The Journey of European Reference Networks

In our first episode of Rare on Air, Julien Poulain interviews Yann Le Cam, Chief Executive Officer of EURORDIS-Rare Diseases Europe, as we take a trip down memory lane with the European Reference Networks (ERNs).
Later in the episode, we hear a conversation on how the ERNs began, led by Rita Francisco, EURORDIS’ Patient Engagement Junior Manager, and Sarah Weiler from the Luxembourg National Alliance for Rare Diseases.
Finding the right expert to access care for a rare disease remains a challenge for many of the 30 million people living with a rare disease in Europe. To address these challenges, the EU created 24 ERNs in 2017. These ERNs have been striving to bring about a Europe in which clinical expertise can travel across borders, so that patients themselves do not have to.

Listen to the episode

ERNs on Air: All episodes

Search by country or ERN for clinical centres that are part of the ERNs using the European Commission’s search tool.

Find more resources and information on ERNs on the European Commission ERN website.

Advocate
Partner
Empower

Advocate

From 2005, through the publication of the EUCERD (EU Committee of Experts on Rare Diseases) recommendations & addendum on ERNs, the European Joint Actions on rare diseases, to the launch of the Networks in 2017, EURORDIS played an instrumental role in advocating for the creation of ERNs as key to improving healthcare for people living with a rare disease in Europe.

Since the launch of the Networks in 2017, we have also actively advocated at the European Commission and European Parliament for patient engagement in the ERNs. Nothing about us without us – EURORDIS together with the rare disease patient community created 24 ePAGs (European Patient Advocacy Groups) to structure patient engagement in the ERNs. Through these ePAGs, supported by EURORDIS, patient representatives can directly work with the clinicians involved in the ERNs to make sure that the needs of the rare disease patient community are reflected in the activities of the ERNs.

To ensure the success and sustainability of the ERN model, the Networks and national health systems must be effectively integrated. EURORDIS published recommendations on how to create clear operating mechanisms that govern the ERNs’ interaction with national health systems. We have also held several webinars on this topic (Deep dive into integration I; Deep dive into integration II) and published a Toolkit on the integration of ERNs and national health systems, to enable the rare disease patient community to take action at a national level.

EURORDIS also contributed to kick-starting the debate on how to build a solid strategy for transforming the wealth of health data coming through the ERNs into improvements in the delivery of highly specialised care for people living with a rare disease.

Ensuring the successful integration of ERNs into national healthcare systems and a strong ERN data strategy are a few of the many elements that can go towards ensuring the future sustainability and effectiveness of the ERNs. These and other aspects to build a mature ERN system by 2030 are summarised in this paper and policy brief.

In 2020, EURORDIS conducted the H-CARE Pilot Survey through the Rare Barometer survey programme with the long-term goal of developing a centralised patient feedback mechanism to measure the evolution of patients’ and caregivers’ experience of the care they receive in the Centres of Expertise that belong to the ERNs.

Partner

EURORDIS together with the rare disease patient community created 24 European Patient Advocacy Groups (ePAGs) to bring together rare disease patient advocates and facilitate their active involvement in the work, development and governance of the ERNs. Each ePAG corresponds to the disease grouping of one of the 24 ERNs, aligning patient organisations, clinicians, and researchers working on the same rare or complex diseases.

The role of ePAG advocates involved in these groups is to partner with clinicians to:

ensure that the needs of people living with a rare disease drive the activities of each European Reference Network.
champion the diversity of views of the wider patient community relevant for each ERN, and not just of their own disease area.
work with their national and European networks in order to facilitate two-way communication between the European Reference Networks and the patient community.
support the development of clinical practice guidelines and other clinical decision support tools and contribute to research, education, information and awareness activities.

The position of an ePAG advocate is a voluntary position and does not involve any financial compensation. Individuals must be endorsed by a patient organisation based in one of these 48 European countries to join as an ePAG advocate.

Empower

In order to empower ePAG advocates with the knowledge and expertise they need to feel confident and be valued partners in the ERNs, EURORDIS provides training through its Open Academy programmes – the Summer School on Medicines Research & Development and Winter School on Scientific Innovation and Translational Research – on topics relevant to the ERNs.

We also facilitate peer learning and cross-ePAG collaboration by organising quarterly webinars dedicated to the exchange of good practices on patient engagement in the ERNs, as well as one annual all-ePAG meeting. EURORDIS also manages working groups where ePAG advocates from different ERNs exchange and share knowledge on different areas relevant to the ERNs such as research, clinical practice guidelines, communication, patient engagement or monitoring and evaluation of the ERNs.

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