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The European Platform for Rare Diseases Started Operating

Published 03.03.2017.

On 1 March, the European Reference Networks (ERN), unique and innovative platform designed for the cross-border cooperation of experts in diagnosing and treating rare and complex diseases with low prevalence, started operating in the European Union.

As stated by the European Commission, 24 ERNs which will include more than 900 specialised medical teams from 26 countries which will work together on numerous issues, from bone to hematological diseases, from pediatric cancers to immunodeficiency.

It is expected that these networks will be the most beneficial for thousands of patients suffering from diseases that require larger concentration of specialist care in areas without the sufficient number of medical experts.

In the EU around 30 million people are affected by one of the six to eight thousand rare diseases, and the large portion of this number is children. A rare disease is the one affecting less than 5 out of 10,000 people.

Virtual ERNs are established in accordance with the EU Directive on Patient Rights in Healthcare.

In practice, the ERNs will develop new, innovative models of healthcare, eHealth tools, medical solutions, and devices. It will also encourage research through extensive clinical studies and contribute to the development of new drugs. All this, along with the benefits for patients, will result in lower costs and more efficient use of resources.

The Commission stated that ERNs would be financed from a series of EU financial mechanisms such as Healthcare Programme, Connecting Europe Facility and Horizon 2020 Research Programme.

Source: EurActiv.rs

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