European Reference Networks workshop for Rare Diseases

2^nd  July 2015, Brussels (BE)

The aim of the workshop was to support rare disease stakeholders in preparation for the first Call to establish ERNs, which is expected in December 2015/January 2016. The event gathered participants with experience of coordinating networks dedicated to specific disease areas requiring highly specialised expertise to deliver optimum clinical care to patients across Europe. EU officials were also present to answer questions and provide updates. By addressing ERN implementation aspects, the workshop provided a possible taste of the second official ERN Conference and associated workshops taking place in Lisbon this October (8-9th).

Importantly, EU officials at the workshop announced a contract with Adobe Connect, which will be used as a communication tool for ERNs. For further development of ERN IT structures, like virtual tumour boards, Ruth Ladenstein offered close cooperation with ExPO-r-Net to make sure that newly established IT-solutions are suitable for the paediatric oncology field.