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To ensure that all centres in Europe that treat children and TYA with cancer meet the

European Standards of Care for Children with Cancer;


To develop pathways that, for complex treatments and rare diseases/situations, allow

access to specialised expertise, specialised technologies (i.e. specialised surgery,

radiotherapy techniques, haematopoietic stem cell transplantation) or clinical research

(i.e. early phase trials of new treatments).


1. Build a European Reference Network (ERN) in paediatric haematology-oncology within the

EU Cross-Border Healthcare Directive (2011/24/EU):


Create tumour boards by disease – to be considered at three levels: institutional,

national and European – in order to provide advice on the best appropriate

treatment and care for individual patients;


Identify centres that are able to deliver standard care and treatments (specialist

centres) as well as hubs of coordination, which will also deliver complex treatments

and specialised technology;


Improve referral to specialist centres and hubs of coordination within EU member

states and across borders;


Set up an efficient e-Health and IT platform;

2. Warrant availability of essential medicines for all patients;

3. Specifically address the needs of children and adolescents with extremely rare cancers

(e.g. adult cancers such as thyroid cancer, breast cancer and melanoma – occurring

extremely rarely in the paediatric population – and extremely rare specific paediatric

malignancies such as pleuropulmonary blastoma, etc.);

4. Ensure that paediatric cancer registries cover all European countries, in order to

adequately monitor the effects of the present Strategic Plan, and ensure that each

National Cancer Plan addresses the specific needs of children and adolescents with cancer;

5. Significantly improve access to palliative care for young patients at the end of their lives;

6. Provide high quality training for all health professionals across Europe, and make

paediatric haematology-oncology a recognised sub-specialty.

The ExPO-r-Net project, funded by DG SANTE, is currently piloting the concept of a European

Reference Network (ERN) in paediatric haematology-oncology, which specifically addresses

the topic of extremely rare cancers and long-term follow-up.



“All European children and young people with cancer should have access

to standards of care, expertise and clinical research.” (Participants at the

SIOPE-ENCCA Conference, 18-19 September 2014)