European Reference Networks (ERNs) are networks of expert healthcare providers from across Europe. The networks seek to pool together the clinical expertise available across Europe and concentrate knowledge and resources on rare and/or complex diseases.
What is an ERN?
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.
In a given country, individuals with a rare and/or complex disease may struggle to obtain a diagnosis or treatment. Like the diseases, the clinical expertise in a given country may also be relatively scarce. This may mean there is a lack of clinician awareness and knowledge of treatment options, limited information available for both patients and healthcare professionals and/or an absence of professional skill in diagnosing and treating these rare or complex conditions.
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.
List of ERNs
There are 24 ERNs, each focusing on a particular rare disease area:
Endo-ERN: European Reference Network on endocrine conditions.
ERKNet: European Reference Network on kidney diseases.
ERN BOND: European Reference Network on bone disorders.
ERN CRANIO: European Reference Network on craniofacial anomalies and ENT disorders.
ERN EpiCARE: European Reference Network on epilepsies.
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.
ERNICA: European Reference Network on inherited and congenital anomalies.
ERN ITHACA: European Reference Network on congenital malformations and rare intellectual disability.
ERN LUNG: European Reference Network on respiratory diseases.
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-RND: European Reference Network on neurological diseases.
ERN Skin: European Reference Network on skin disorders.
ERN TRANSPLANT-CHILD: European Reference Network on transplantation in children.
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
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.