Patients’ Families Advocacy Groups


« Because all children deserve the best treatment, no matter where they live »

In line with its slogan, ExPO-r-Net had the interest of the patient and his/her family at the heart of all activities, as it aimed to elevate standards of treatment and care in paediatric oncology across all of Europe, improve availability to information, and optimise access to specialised treatment abroad.

Cooperation with representative advocacy groups

Cooperation with patients’ and families’ advocacy groups was enshrined in the project through the involvement of Childhood Cancer International (CCI).

CCI is the only non-medical global childhood cancer organisation and represents 61 parent organisations in 30 countries in Europe.

The European branch of CCI was instrumental in feeding the needs of childhood cancer parents’ organisations and survivors (groups) to the ExPO-r-Net project.

Cross-border treatment: State of affairs

CCI already enables parent/patient groups to link and exchange information on cross-border treatments. Some patients travel for treatments in large expert centres, often from one country to another. The E112 procedure is not organised, being done on a case-by-case basis and parents and health professionals are struggling to acquire information and authorisation.

Travelling for treatment also represents a potential burden on families, such as leaving their cultural and language environment and entering social isolation for treatments that may extend over many months.

ExPO-r-Net contribution

To address the identified challenges, EXPO-r-Net was set to improve effective access to high quality health care for children with cancer as follows:

  • Individuals, concerned families, Parents Associations and Charities benefited from a European Reference Network on Paediatric Oncology (ERN-PO) with established criteria when seeking advice;
  • Improved ERN-PO visibility – including as a ‘roadmap’ of centres – allowed involved groups to identify expertise care easily;
  • The project provided clear rules and reliable information on access and reimbursement for healthcare received in another EU country, enabling involved groups to make informed choices before going abroad for care;
  • By exploring ICT and eHealth modalities, ExPO-r-Net seeked mechanisms to facilitate movement of information and knowledge rather than patients whenever possible.


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