European Paediatric Cancer Community Proposal for Improvement of the EU Revised Pharmaceutical Legislation

On April 26th 2023, the European Commission released a proposal for revision of the Pharmaceutical legislation, which includes provisions on medicines for paediatric and rare diseases.

Over the summer, CCI-E‘s and SIOPE‘s policy teams carried out an in-depth analysis of the proposal and identified six key priority areas which require careful consideration during the negotiation of the revised EU Pharmaceutical legislation among EU policy-makers.

Based on this analysis, CCI-E and SIOPE drafted a position paper detailing points which should be upheld, as well as areas with specific suggestions for amendments which can further strengthen the reform and ultimately, improve the well-being of children and young cancer patients with unmet medical needs and restore them to their full health.

This joint position paper was shared with all the MEPs and other stakeholders with whom the policy team has met since mid-August and used as a support to advocate our concerns.

We invite you to read it.

Should you have any questions, do not hesitate to contact Teresa Pais ( or Marine Gouders (



Childhood Cancer International – Europe (CCI-E, or CCI Europe) represents childhood cancer parent and survivor groups as well as other childhood cancer organisations in Europe: 63 organisations in 34 European countries are members of CCI-E. CCI Europe works together with all relevant stakeholders for the same aim: help children and adolescents with cancer to be cured, with no – or as few as possible – long term health problems/late effects. (

The European Society for Paediatric Oncology (SIOPE or SIOP Europe) is the single united European organisation representing all professionals working in the field of childhood cancers. With more than 2,500 members across 35 countries, SIOP Europe is leading the way to ensure the best possible care and outcomes for all children and adolescents with cancer in Europe. (