About European Reference Networks

European Reference Networks (ERNs) are unique and innovative cross-border collaborations between specialists for the diagnosis and treatment of rare or low prevalence complex diseases.

What are European Reference Networks?

The European Reference Networks (ERNs) comprise doctors and researchers with expertise in the fields of rare or low-prevalence and complex diseases. ERNs are “virtual networks” which review the diagnosis and the best possible treatment/s for patients from all over Europe. Twenty-four ERNs were launched in 2017, involving more than 900 highly specialised healthcare teams, located in more than 300 hospitals in 26 European countries.

In 2018 and 2019, Affiliated Partners joined the ERNs to enable a broader geographic coverage of the networks and facilitate access for patients where a specific ERN was not yet represented by a full member in a country. Additionally, another call from the European Commission was launched in September 2019 to expand the number of ERN full members across Europe. The results of the call will be known in July 2021.

Please visit the “members” section of this website for more information.

How can European Reference Networks help you?

The ERNs help patients with rare or low-prevalence complex diseases. A disease is defined as rare when it affects less than one in 2,000 people, is serious, chronic and often life-threatening. Between 5,000 and 8,000 rare diseases affect the daily lives of around 30 million people in the EU.

A cancer is defined as rare when it affects less than 6 per 100,000 individuals a year. To date, and across Europe, there are an estimated 5.1 million people living with a rare cancer.

The ERNs provide virtual access to highly-specialised multidisciplinary teams with a required concentration of knowledge and resources to treat a specific rare disease/cancer or group of rare diseases/cancers. ERNs can provide a second opinion for diagnosis and treatment.

How do you access the European Reference Networks?

Within the ERNs, a patient’s medical records travel to experts in his/her disease via a secure electronic platform. This means that the patient does not have to travel and hopefully can be treated as close to his /her home as possible.

When a rare disease patient’s case requires referral to specialised experts, the patient’s doctor can seek advice from a relevant ERN.

A patient’s own local doctor remains the patients’ single point of contact with an ERN team. He/she has access to the ERN experts via a secure web-based platform, can share data, collect the experts’ input and discuss it with the patient at each step of the patient journey, starting from diagnosis and moving on to treatment.

Please note that each country has specific rules and arrangements for the referral of patient cases to other specialists, and notably to ERNs.

Cross Border Health Care

EU citizens have the right to access healthcare in any EU country and to be reimbursed for care abroad by their home country.

Directive 2011/24/EU on patients’ rights in cross-border healthcare sets out the conditions under which a patient may travel to another EU country to receive medical care and reimbursement. It covers healthcare costs, as well as the prescription and delivery of medications and medical devices.

Key elements

With health policies and systems increasingly interconnected, the Directive makes it easier to access:

  • Information on available healthcare in other European countries.
  • Alternative healthcare options, and/or specialised treatment abroad.

The provisions strike the right balance between maintaining the sustainability of health systems, while protecting patients’ right to seek treatment outside their home country.

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