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.
For more information, open and download the 2018 Final Overview Report State of the Art of Rare Disease Activities in Europe
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.
There are 24 ERNs, each focusing on a particular rare disease area. Click here to view the full list.
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.
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