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What are the European Reference Networks?
“European Reference Networks: Connecting Expertise for Better Care for People Living with Rare Diseases”
You have probably heard of rare diseases and complex conditions (in the EU alone, between 27 and 36 million people live with a rare disease), but you may not yet be familiar with the ERNs, or European Reference Networks. From JARDIN we want to highlight their value and give visibility to their undertakings.
European Reference Networks (ERNs) are multinational networks of highly specialised healthcare providers (HCP) across Europe in thematically coherent medical domains, addressing rare or low-prevalence complex diseases or conditions requiring exceptional concentration of expertise and resources.
JARDIN aims to enhance the impact of the ERNs even further by addressing all aspects of their better integration into national healthcare systems in MS, Norway, and Ukraine.
There are currently 24 ERNs providing virtual expert consultations for people living with rare diseases or complex conditions from all member states (MS), Norway, and Ukraine, as well as support knowledge generation, professional training and education, and research.
Here is the complete list of the European Reference Networks, so you can easily find out the health scope of each one and visit their websites to learn more about them.
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Know moreEndo-ERN. ERN on endocrine conditions
Endo-ERN aims to improve access to high-quality healthcare for patients with rare hormonal disorders. Its mission is to reduce and ultimately abolish inequalities in care for patients with rare endocrine conditions in Europe through facilitating knowledge sharing and related healthcare and research.
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Know moreERKNet. ERN on kidney diseases
ERKNet is the European Reference Network for Rare Kidney Diseases, a consortium of 72 expert pediatric and adult nephrology centres in 24 European countries providing healthcare to more than 70,000 patients with rare disorders of the kidneys.
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Know moreERN BOND. ERN on bone disorders
BOND gathers all rare diseases affecting cartilage, bone and dentine, mainly congenital, chronic and of genetic origin. ERN BOND's vision is to provide multidisciplinary, holistic, continuous, patient-centred and participatory care to people living with rare bone diseases (RBD).
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Know moreERN CRANIO. ERN on craniofacial anomalies and ENT disorders
CRANIO is the European Reference Network for rare and/or complex craniofacial anomalies and ear, nose and throat (ENT) disorders. It covers 4 primary disease areas: craniosynostosis and craniofacial anomalies, cleft lip and palate, orodental anomalies, and ear, nose and throat (ENT) disorders.
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Know moreEpiCARE. ERN on rare and complex epilepsies
EpiCARE brings together highly specialized health centres (38 full members and 12 affiliated partners) in 26 European countries with expertise in rare and complex epilepsies.
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Know moreERN EURACAN. ERN on adult cancers (solid tumours)
EURACAN connects patients who have rare adult solid cancers to expert health care centres across Europe. The mission of EURACAN, based on its network of expert centres, is to improve diagnosis, treatment management, knowledge, research and communication.
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Know moreERN-EuroBloodNet. ERN on Haematological diseases
ERN-EuroBloodNet is a collaborative network aiming to improve the healthcare services of complex or rare hematological diseases (RHD) and conditions that require highly specialized treatment in Europe.
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Know moreERN eUROGEN. ERN on uro-recto-genital diseases and conditions
Urogenital conditions significantly impact paediatric, adolescent, and adult patients, their families, and their quality of life. ERN eUROGEN is the European Reference Network (ERN) for rare urogenital diseases and complex conditions.
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Know moreERN EURO-NMD. ERN on neuromuscular diseases
EURO-NMD is a European Reference Network for the thematic grouping of rare neuromuscular diseases (NMDs), a broad group of related disorders that represent a major cause of mortality and lifelong disability in children and adults.
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Know moreERN-EYE. ERN on eye diseases
ERN-EYE is a European reference network dedicated to Rare Eye Diseases. It covers 24 out of 27 EU countries, with 52 full members and 8 affiliated partners, across European Union to guarantee the best coverage of more than 900 Rare Eye Diseases.
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Know moreERN GENTURIS. ERN on genetic tumour risk syndromes
The patients with rare genetic tumour risk syndromes are at very high hereditary risk of developing multiple tumours, which are often located in multiple organ systems. ERN GENTURIS is the European Reference Network (ERN) for all patients with one of the rare genetic tumour risk syndromes (genturis).
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Know moreERN GUARD-Heart. ERN on uncommon and rare diseases of the heart
The mission of ERN GUARD-Heart is to facilitate access to diagnosis and treatment of rare and complex diseases of the heart in adult and paediatric patients. ERN GUARD-Heart brings together 44 expert healthcare providers from 16 different Member States committed to patient-centred care and efficient practice.
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Know moreERN ITHACA. ERN on congenital malformations and rare neurodevelopmental disabilities
ITHACA stands for Intellectual disability, TeleHealth, Autism and Congenital Anomalies. It also refers to the odyssey of the diagnostic journey of a child with a rare developmental disease, and it responds to the needs of patients with rare (multiple) malformation syndromes and rare intellectual and other neurodevelopmental disorders.
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Know moreERN LUNG. ERN on respiratory diseases
ERN-LUNG is a patient-centric network, committed Europe-wide and globally to reducing morbidity and mortality from rare lung diseases in people of all ages through patient care, advocacy, education, research and knowledge-sharing.
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Know moreERN PaedCan. ERN on paediatric cancer (haemato-oncology)
The European Reference Network on Paediatric Cancer (ERN PaedCan) will reduce inequalities in childhood cancer survival by providing high-quality, accessible and cost-effective cross-border healthcare to children and adolescents with cancer, regardless to where they live.
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Know moreERN RARE-LIVER. ERN on hepatological diseases
RARE-LIVER is a Europe-wide network for centres of excellence in the clinical management of rare liver disease in adults and in children. Types of diseases covered by the network currently include Autoimmune liver disease (AILD); Metabolic, Billary atresia and related disease; structural liver disease and rare liver disease in pregnancy.
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Know moreERN ReCONNET. ERN on connective tissue and musculoskeletal diseases
ReCONNET is the European Reference Network on Connective Tissue and Musculoskeletal Diseases. The main aim of ERN ReCONNET is to improve the management of rare connective tissue and musculo-skeletal diseases (rCTDs) across the EU.
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Know moreERN RITA. ERN on immunodeficiency, autoinflammatory and autoimmune diseases
RITA’S vision is that every patient with a rare immunodeficiency, autoinflammatory or autoimmune disorder can live their life to its full potential. The aim of the RITA network is to provide guidelines for all affected patients, regardless of their national or ethnic origin. This will facilitate access to diagnostic tests and therapies such as biological therapies, immunoglobulin replacement, stem cell transplantation and gene therapy.
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Know moreERN Skin. ERN on skin disorders
The rarity of patients suffering from rare skin diseases and the difference in their aetiologies and clinical features make research and knowledge slow and difficult. ERN Skin covers the medical field of rare, complex and undiagnosed skin disorders in children and adults.
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Know moreERN TransplantChild. ERN on transplantation in children
ERN Transplantchild encompasses both solid organ transplantation (SOT), included multiorgan and complex procedures, and hematopoietic stem cells transplantation (HSCT). The main goal is to have a significant impact on children’s quality of life in the long term.
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Know moreERNICA. ERN on inherited and congenital (digestive and gastrointestinal) anomalies
ERNICA aims to pool together disease-specific expertise, knowledge and resources on rare inherited and congenital anomalies from across Europe to achieve health goals that may otherwise be unachievable in a single country.
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Know moreERN-RND. ERN for rare neurological diseases
The ERN-RND is a European Reference Network established by the EU to support patients and families affected by rare neurological diseases (RND). ERN-RND unites 64 of Europe’s leading expert centres and 4 affiliated partners in 24 European countries.
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Know moreMetabERN. ERN on hereditary Metabolic disorders
MetabERN is a European Network created to address the cross-border needs of all patients and their families affected by rare inherited metabolic rare diseases (IMDs). The network aims to provide services at EU level to improve the quality of life of patients and their families.
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Know moreVASCERN. ERN on multisystemic vascular diseases
VASCERN is the ERN on Rare Multisystemic Vascular Diseases currently gathers 48 expert teams from 39 highly specialized multidisciplinary Healthcare providers (HCPs) plus 6 affiliated partner centers, coming from 19 EU Member States, in this area of expertise.
Want to know more about ERNs?
If you want to know more about the European Reference Networks, JARDIN offers you several links to information and resources on the website.
Also, you can:
Download the brochure published by the Publications Office of the European Union.
Watch the European Commission’s video explaining how these networks were created to respond to the needs of people living with rare diseases or complex conditions.
Follow JARDIN on social media to stay up to date on ERNs and the latest information on rare diseases, complex conditions and undiagnosed diseases in the European Union.
And if you want to be kept up to date with the latest news and developments on ERNs subscribe to our newsletter!