C6doDSiWcAAfO0j 24 European Reference Networks (ERNs) were formally launched on 9 March 2017. Representatives from the networks and Member States, along with patients and policymakers, gathered in Vilnius, Lithuania, for the 3rd ERN Conference and kick-off meetings (9 & 10 March).

Maurizio Scarpa, Coordinator of the European Reference Network for Hereditary Metabolic Diseases (MetabERN) discussed how ERNs could be cross-linked. The biggest challenges for many rare diseases is securing a diagnosis. For some conditions, it can take an average of 43,800 hours before a diagnosis is found. While the 24 ERNs are organised in a manner designed to reflect how medical specialties are grouped, many patients will require input from several 

ERN 2017_MAURIZIO SCARPAERNs. “There is crosslinking in nature,” said Dr Scarpa. “Nothing is isolated.” He said ERNs should be at the frontier of ‘network medicine’ – a new way of thinking of health which breaks down silos between disciplines and disease taxonomies. Tools must be developed to link the ERNs, including a shared virtual counselling system that allowed members of different ERNs to discuss complex cases. “ERNs are not a project or a programme they are a concept – a revolution in the understanding of rare diseases,” he said. “Don’t think of ERNs as discrete networks but as a large task force for sharing expertise.”

Full report of the Conference available at https://ec.europa.eu/health/sites/health/files/ern/docs/ev_20170309_frep_en.pdf