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First anniversary of EU Reference Networks that help thousands of rare disease patients

08 March 2018   (0 Comments)
Posted by: Heather Smith
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The computer networks are up and running and rare disease patients have started to enter their data: One year in, 26 countries are already engaging in 24 European Reference Networks (ERNs). "As a medical doctor", Commissioner for Health and Food Safety Andriukaitis writes, "I have too often been witness to tragic stories from patients with rare or complex diseases. Connecting our assets through ERNs can bring concrete benefits to many thousands of patients."

Picture of the European Reference Networks logo and its slogan

A year after their launch, the European Reference Networks are looking ahead to what it will take to truly perform their mission: connect patients with the Continent’s top experts, no matter where they live. Health and Food Safety Commissioner Vytenis Andriukaitis is one of the ERN's biggest cheerleaders, writes Politico; he envisions them as the 'backbone' of a broader pan-European health data network.

Three immediate challenges

The Commissioner presented three immediate challenges facing the ERN as they enter their next phase.The first, he said, is making sure the ERN are integrated into national and regional health systems. Member countries need to assess whether they need to change their laws to aid success. It's not yet clear how patients get referred into the ERN, and the exact definition of how member countries support the ERN is still murky. Hospital support is the No. 2 challenge for the ERN, Andriukaitis said, with hospital managers as 'key players'.

Finally, and perhaps most politically important, is pulling other countries into the networks. Right now, 25 EU countries and Norway are part of the 24 networks. A big concern has long been that the 'centers of excellence' - the hubs of the ERN spokes - will be disproportionately in Western and Northern European countries.

Call for new members at the end of 2018

Andriukaitis said the Commission is planning to launch a call for new ERN members to join at the end of 2018. "We need to ensure that new members bring new knowledge into the networks and increase the geographical coverage," he said at an  event on 28 February, hosted by the patient group EURORDIS. In patients' own countries, he added, "networks need to become stronger, more productive and more accessible."

Enormous EU-added value

"As a medical doctor", the Commissioner writes in an article, "I have too often been witness to tragic stories from patients with rare or complex diseases. [...] Many patients are left in the dark for years, unable to find an accurate diagnosis let alone appropriate treatment. It is also a frustrating situation for doctors, who want the best possible results for their patients."

"Working on rare diseases is an area of enormous EU-added value: using the EU's great pool of knowledge and expertise, by connecting our assets through ERNs can bring concrete benefits to many thousands of patients."

Read the full article on the website of these Permanent Representations: