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European Networks of Reference for Rare Diseases

A new European achievement in medical care

European Networks of Reference for Rare Diseases

Claudia Astarita


Rare diseases are usually defined as diseases affecting no more than 5 individuals out of 10.000, greatly impacting the life of patients and of the people around them. Within the EU, between 6.000 and 8.000 rare diseases affect 30 million people and a great number of children among them. Rare and complex diseases might cause chronical health problems and are often deadly. The fragmentation of knowledge about these pathologies and the presence of isolated cases, whose characteristics are hard to investigate, hindered the efficacy of past medical actions.

In fact, it is not easy for doctors to identify them and to provide an effective therapy immediately. Usually, doctors need a lot of information and can definitely benefit from best practices of other specialists used in other parts of the world. For these reasons, the EU has promoted the birth of the European Networks of Reference for Rare Diseases. They are virtual hubs gathering all those people providing medical care throughout Europe to those people affected by rare disease or complex pathologies.

These networks include a number of information on the diseases and the treatments patients are given, increasing the level of knowledge and the practice-exchange among the European specialists. These networks will also foster research through wide clinical studies and new medical tools the whole community will benefit of.

Vytenis Andriukaitis - EU commissioner for Health and Food Security - also expressed his appreciation towards this initiative. "As a doctor, I have often witnessed serious hardship in treating a rare disease or in giving my colleagues the help required...the networks will finally connect the European specialists increasing the collaboration and the efficacy in the treatment of rare diseases".

The European Networks of Reference for Rare Diseases will be 24 in total, uniting more than 900 units of highly specialized medical assistant in 26 European countries, and Italy is certainly part of it. This new initiative stands out as a further step forward in the treatment of rare diseases with potential global benein the old continent not to be neglected.

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