In a given European 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 professionals from specialised healthcare providers 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 and in accordance with national health system rules, a patient’s information can be referred to the relevant ERN member/affiliated partner hospital in their country by their local healthcare provider. The relevant ERN member/affiliated partner can access expert knowledge and advice from other member/affiliated partner hospitals within that ERN, if this is needed.
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. Centres not involved in a relevant ERN may be granted guest access to the CPMS if appropriate and on request.
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 initiated?
The first ERNs were launched in March 2017 in response to a European Commission call which featured as part of the ‘Third programme for the union's action in the field of health’.
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?
As outlined in the EU Directive 2011/24/EU ‘European Reference Networks can improve the access to diagnosis and the provision of high-quality healthcare to all patients who have conditions requiring a particular concentration of resources or expertise and could also be focal points for medical training and research, information dissemination and evaluation, especially for rare diseases’