In a given EU country, individuals with a rare and/or complex disease may struggle to obtain an accurate diagnosis and/or appropriate treatment. There may be limited information available on such diseases and clinical expertise may be scarse and/or scattered.
European Reference Networks (ERNs) are networks of expert healthcare providers from across Europe. The networks seek to pool together the 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 patient 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 clinicians from across Europe access to expertise and the 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:
ERNs seek to collaborate on the following: