European Reference Networks

European Reference Networks (ERNs) are virtual networks of healthcare providers from across Europe. The networks aim to pool together expertise on complex and rare diseases and concentrate knowledge and resources. There are 24 ERNs, each focusing on a particular disease area. ERN CRANIO focuses on rare and/or complex craniofacial anomalies and ear, nose and throat (ENT) disorders.

Network Name Description
ERN BOND European Reference Network on bone disorders
ERN CRANIO European Reference Network on craniofacial anomalies and ear, nose and throat (ENT) disorders
Endo-ERN European Reference Network on endocrine conditions
ERN EpiCARE European Reference Network on epilepsies
ERKNet European Reference Network on kidney diseases
ERN-RND European Reference Network on neurological diseases
ERNICA European Reference Network on inherited and congenital anomalies
ERN LUNG European Reference Network on respiratory diseases
ERN Skin European Reference Network on skin disorders
ERN EURACAN European Reference Network on adult cancers (solid tumours)
ERN EuroBloodNet European Reference Network on haematological diseases
ERN eUROGEN European Reference Network on urogenital diseases and conditions
ERN EURO-NMD European Reference Network on neuromuscular diseases
ERN EYE European Reference Network on eye diseases
ERN GENTURIS European Reference Network on genetic tumour risk syndromes
ERN GUARD-HEART European Reference Network on diseases of the heart
ERN ITHACA European Reference Network on congenital malformations and rare intellectual disability
MetabERN European Reference Network on hereditary metabolic disorders
ERN PaedCan European Reference Network on paediatric cancer (haemato-oncology)
ERN RARE-LIVER European Reference Network on hepatological diseases
ERN ReCONNET European Reference Network on connective tissue and musculoskeletal diseases
ERN RITA European Reference Network on immunodeficiency, autoinflammatory and autoimmune diseases
ERN TRANSPLANT-CHILD European Reference Network on Transplantation in Children
VASCERN European Reference Network on Rare Multisystemic Vascular Diseases

 

With their consent, individual healthcare providers can refer a patient to a particular ERN in order to access expert knowledge and advice from across Europe. Consultations are carried out through the Clinical Patient Management System (CPMS), a web-based clinical software application allowing healthcare providers from all over the EU to work together virtually to diagnose and treat patients with rare, low prevalence and complex diseases.

No country alone has the knowledge and capacity to treat all rare and complex diseases. ERNs offer patients and doctors from across Europe access to the best expertise and timely exchange of life-saving knowledge, without having to travel to another country.

When and why were the ERNs set up?

The first ERNs were launched in March 2017. Their initiation and development emerged from EU legislation – Directive 2011/24/EU on patients’ rights in cross-border healthcare. This directive recognises the value of voluntary cooperation between healthcare centres for specialised care.

What is expected from the ERNs?

It is expected that the ERNs will:

  • Facilitate clinician access to a larger pool of specialised knowledge and expertise
  • Pool together a bank of specialised resources for patients and healthcare providers
  • Help improve understanding of rare diseases by pooling together patient data for use in research studies

ERNs seek to collaborate on the following:

  • The development of guidelines, training and knowledge exchange
  • The execution of large clinical studies to improve understanding of diseases
  • The development of new drugs and medical devices by gathering patient data
  • The development of new care models, eHealth solutions and tools