EURORDIS promotes the creation of European Reference Networks to cover every rare disease within the European Union

ENERCA is one of the pilot ERN that will apply for the recognition as an ERN for Rare Anaemias

January 23, 2015

When it comes to rare diseases, having access to experts in the field that provide specific treatments can become a real challenge. With the idea of sharing the knowledge between healthcare professionals across borders in order to have the most recent and reliable information, European Reference Networks are born.

European Reference Networks (ERNs), constituted by centers of expertise, healthcare providers and laboratories, create a clear structure for knowledge sharing and care coordination within the European Union. Taking into account the numberless rare diseases that exist, ERNs have to be created by groups of diseases, promoting the sharing and mobility of expertise rather than the movement of the patients for one center to another looking for the high specific healthcare they need. In this way, if there are no centers specialized in a certain disease, the doctors can make a profit on the information that can get from the centers in other countries: ERNs provide the structure that facilitates a doctor's ability to access knowledge and experiences from experts in the field.

Furthermore, the low prevalence of rare diseases and the scattered patient populations give rise to the added value that ERNs can bring to these patients. Thus, “EURORDIS aims to ensure that every rare disease is covered by one ERN so that every person finds a home within the European System of ERNs”.

ENERCA promotes the participation of health professionals, patients, health authorities and other stakeholders of all Member states in the design, validation and implementation of services aimed to improve the tackle of rare anaemias. The way forward is the recognition as an ERN by the European Commission and to have national recognition of centres of expertise.

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