European Reference Networks were at the heart of the debate during the EURORDIS Membership Meeting

The event covered the most important challenges in the fight against rare diseases

June 7, 2013

EURORDIS Membership Meeting 2013

The EURORDIS Membership Meeting 2013, which took place in Dubrovnik between May 30 and June 1, was a new opportunity to create synergies between patients and professionals and to discuss about the new tendencies in rare diseases management. The creation of European Reference Networks & Centres of Expertise and the development of a common European Rare Diseases Registration Platform were at the core of the debate. ENERCA brought to the event its over 10 years of experience in a joint effort across Europe to fight rare anaemias.

The EURORDIS Meeting included 12 Workshops to address specific issues such as: The importance of National Plans; controversies around newborn screening and genetic testing; specialized social services; off-label use of medicines in rare diseases; or the role of patient organisations. It was a remarkable initiative that covered the most important challenges faced by patients and professionals in the fight against rare diseases.

The concepts of Centres of Expertise and European Reference Networks like ENERCA have been analysed and developed since 2005 by the European Commission. During the meeting in Dubrovnik it became clear that now they are key element of the EU strategy on rare diseases and National Plans for Rare Diseases. One of the workshop included the presentation of the EUCERD Draft Recommendation on European Reference Networks. 

Another workshop studied the opportunities of an European Rare Diseases Registration Platform, one strategic objective of the European Commission. This platform is being developed within the EPIRARE project, and will provide common services and tools for the existing (and future) rare diseases registries in the European Union. ENERCA will establish an e-registry platform for rare anaemias in line with the EPIRARE project objectives and inspired by documents such as the “Registries for Evaluating Patient Outcomes: A User’s Guide”, by the Agency for Healthcare Research and Quality of the U.S. Department of Health and Human Services.

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