Published: 27/04/2017 Tags: The Ehlers-Danlos Society News

Rare diseases: New steps in EU collaboration to improve citizens’ lives

Published by EURODIS, 12th April 2017

In the face of current Euroscepticism, the area of rare diseases is one that proves cross-border, European collaboration is essential to improve the lives of EU citizens.

European collaboration on rare diseases results in policies that bring high added value to patients and their families, and in turn has a direct positive impact on their daily lives.

Never is this truer than in the case of the new European Reference Networks (ERNs); by creating cross-border virtual networks of doctors, rare disease knowledge and expertise will travel, rather than the patient.

European Reference Networks: cross-border is better

The 24 ERNs bring together nearly 1,000 healthcare providers across Europe to tackle complex or rare medical conditions that require highly specialised treatment and a concentration of knowledge and resources.

Through the ERNs, healthcare professionals will gain new knowledge, resulting in improved clinical excellence, the development of best practice guidelines, and better diagnosis, healthcare and treatment outcomes for patients.

Proving the value of such EU cooperation, the European Ombudsman recently presented its inaugural overall Award for Good Administration to the European Commission’s Directorate for Health and Food Safety (DG SANTE), as nominated by EURORDIS. The Award recognises DG SANTE’s work on EU initiatives, such as the European Reference Networks, which directly improve the lives of the 30 million people living with a rare disease across Europe.

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