ExPO-r-Net profiled at all levels

Project Coordinator Professor Ruth Ladenstein took part in several international events where ExPO-r-Net was presented since last summer: at the meeting “Cross-Border Healthcare in Europe” on 1st July in Brussels, Belgium; at the workshop “Realising Rare Disease European Reference Networks” on 2nd July in Brussels, Belgium; at the European Cancer Congress (in particular at the ECCO Oncopolicy Forum and during the SIOPE Session) 25-29 September in Vienna, Austria; as one of the main speakers at the “SIOPE-MAC launch of the European Cancer Strategy for Children and Adolescents” and at the Data Protection event, on 18th and 19th November at the European Parliament in Brussels, Belgium; and at the financial workshop “How to prepare the final financial report” on 7th December in Luxembourg. During these meetings, the paediatric oncology community proved to be highly visible, used to working together, and well interconnected.

One of the major events where the work performed within the project has been showcased was the 2nd ERN Conference (8-9 October 2015, Lisbon, Portugal), where the ExPO-r-Net project proved to be progressing well in awareness raising among other successful aspects. Prof Ladenstein made a general introduction on the project and – in spite of other concurring congresses taking place in the same period – several partners could attend this high profile meeting, including Project Manager Barbara Brunmair, Adela Cañete, Jerzy Kowalzcyk, Günter Schreier and Piotr Czauderna. The Conference was useful and informative as concerns some specific aspects of the future ERNs’ structure that needed some clarification – e.g. sustainability of the networks, cooperation with EU Member States in their concrete implementation, and communication to parent and patient groups. The European Commission is currently negotiating aspects related to reimbursement with EU Member States, as the work performed by specialists within VTBs will be probably on a voluntary basis at the start of ERNs, with the expectation that this will change in the future.