Policy Makers

Synergies and singularities of addressing child cancer at EU level

As rare cancer, improvements in the treatment and care of children and young people with cancer can only be achieved at the European level in cooperation with Member States.

Several European initiatives on rare tumours or adults’ sarcoma already exist but they do not always include tumours occurring in paediatric age.

  • ExPO-r-Net targeted the specificities of childhood cancer by incorporating existing EU expertise and building on already available information to help patients get access to the best possible information, treatment and care.

European Reference Networks

ExPO-r-Net inscribed itself into the implementation of the European Union Directive 2011/24/EU on patients’ rights in cross-border healthcare. The project was indeed a selected pilot to pave the way for the European Reference Networks roll-out.

Supported by the EU Health Programme 2008-2013, ExPO-r-Net was therefore a partnership between the pan-European paediatric haematology oncology community and the European Commission.

  • As a pilot, ExPO-r-Net showcased how the Cross-Border Healthcare Directive can be successful.

Guidelines for Quality in Cancer Care

The European Standards of Care for Children with Cancer have been developed within the European Partnership for Action Against Cancer (EPAAC) Joint Action. These guidelines provided a cornerstone for the ExPO-r-Net mission of identifying hubs of coordination to build a paediatric oncology reference network. The project also fostered the adoption of the Standards to improve treatment and care despite geographical location, supported by a recognition system and the self-assessment tools.

  • ExPO-r-Net operationalised the EPAAC–endorsed European Standards of Care for Children, thus also ensuring continuity of EPAAC and avoiding fragmentation.

Evidence-based decision making

Through one of its key project’s partners – SIOPE (European Society for Paediatric Oncology), ExPO-r-Net was uniquely positioned to communicate its work and findings towards EU policy makers, including on:

  • Current needs in relation to health inequalities for children with cancer;
  • Successes and challenges in implementing the ERN concept;
  • The potential of ICT tools and eHealth in treating complex conditions;
  • Transferability of lessons learned to the wider rare cancer and rare disease policy frameworks.



CCRI - Children’s Cancer Research Institute, Zimmermannplatz 10, 1090 Vienna, Austria

Project Coordinator

Professor Ruth Ladenstein

Project Manager

Barbara Brunmair, Priv. Doz. Dr.

Dissemination Management Team

SIOP Europe (SIOPE), the European Society for Paediatric Oncology


Address: Av. E. Mounier 83, 1200 Brussels, Belgium