CCI Europe

EU Legislative Interests

CCI Europe (CCI-E) has a prominent focus on EU policies and programmes in the field of health as well as science, research and innovation. This is why CCI-E engages in oncopolicy affairs extensively, having a sustained and regular interaction with EU policy-makers, representing the childhood cancer patients' voice in the EU arena. CCI-E aims at creating awareness on childhood ccancer and their specifities, contribuiting to the public debate on EU Health and research policies and legislation, on childhood cancer and survivorship issues. Following are the areas of EU Health and Research which are of particular interest to CCI-E: Cancer; Rare Cancers; Rare Diseases; Cancer Information Systems; Cross-Border Health Care; Mental Health; Access to Healthcare; Access to Medicines; Innovative Treatments; Essential Medicines, Quality of (Health)Care; Survivorship, European Reference Networks (such as ERN PaedCan). Specific legislative and related implementation acts that CCI-E actively monitors include: the Pharmaceutical Package, Horizon Europe (Cancer Mission), Europe’s Beating Cancer Plan, EU4Health, follow-up to Joint Actions on Rare Cancers (JARC) as well as Cross-Border Healthcare Directive, Health Technology Assessment Regulation, European Health Data Space, European Care Strategy, etc. MEPs Against Cancer (MAC) Interest Group has been a close partner of CCI Europe and SIOP Europe in promoting a more enabling policy environment for younger cancer patients and professionals serving them. The Rare Diseases and Cancer Intergroup is a dedicated forum of discussion and brainstorming for CCI-E and its partner organisations. Finally, CCI-E, together with SIOPE, has a long-term close cooperation and fruitful dialogues with numerous DGs of the European Commission (e.g. DG Research, DG SANTE) on childhood cancer challenges and unmet medical needs in Europe through many events, conferences and meetings (e.g. International Childhood Cancer Day - ICCD event that is yearly organised by SIOPE in the European Parliament).

Communication Activities

EVENTS AND CAMPAIGNS CCI-E together with SIOPE, the only pan-European organisation representing all professionals working in the field of childhood cancers, organise every year in September a joint campaign on Childhood Cancer Awareness Month (CCAM): part of which is a policy event hosted by MEP. This event in 2025 was titled "No Child left Behind: Prioritising Childhood Cancer in the next EU budget” and aimed at raising awareness on the need for continued and sustained public funding in childhood cancers, as these are very rare diseases with high unmet needs. In addition, on February 15th - International Childhood Cancer Day (ICCD) - CCI-E together with SIOPE organises another policy event aiming at raising awareness on childhood cancer. This event is hosted by a leading childhood cancer supporter. IMPORTANT PUBLICATIONS INCLUDE: - European Standards of Care for for Children & Adolescents with Cancer (Sept. 2025) https://ccieurope.eu/european-standards-of-care/ - Gaps and opportunities in capturing patient reported outcomes (PROs) in Pediatric Cancer Care (Dec.205) https://www.sciencedirect.com/science/article/pii/S2772610X25000959 - A Call for Equal Access to Psychosocial Support (Oct. 2024) https://ccieurope.eu/wp-content/uploads/2025/07/Position-Paper_Call-for-Equal-Access-to-psychosocial-support_final.pdf - Perceptions of physicians caring for pediatric patients with cancer in Europe: insights into the use of palliative care, its timing, and barriers to early (Oct.2024) - CCI Europe and SIOP Europe Manifesto on the paediatric oncology & haematology community (Feb. 2024) https://ccieurope.eu/manifesto-for-the-2024-european-elections/ - WHO Europe Report on Childhood Cancer Inequalities in Europe (March 2022) - European Childhood Cancer Organisations’ Recommendations following the European Commission’s Evaluation of the Legislation for Medicines for Rare Diseases and Children and the launch of the Pharmaceutical Strategy for Europe, (updated in June 2022) - The European Childhood Cancer Community calls for bold implementation of the European Care Strategy: Ensuring genuine support for young patients with life-threatening diseases, survivors and their family (Nov. 2022) - SIOPE, CCI-E & PanCare Position Paper: A Europe for Children & Adolescents with Cancer: Position paper of the European paediatric cancer community (Nov. 2022) - Essential medicines for childhood cancer in Europe: a pan-European, systematic analysis by SIOPE, (Dec. 2022) EU CONSULTATIONS: CCI-E regularly responds to EU consultations in the field of health, research, and innovation, in order to contribute with evidence-based content. CCI-E involves its members at national level raising awareness on the topics to comment and deadlines to follow. EU PROJECTS: - YARN https://beatcancer.eu/ - PanCare4AYA https://pancare4aya.eu/ - Althea - ERN PaedCAN https://paedcan.ern-net.eu/ Full list of CCI Europe projects is here: https://ccieurope.eu/projects/ Previous EU projects: - EU-CAYAS-NET: Coordinator, https://beatcancer.eu/ - smartCARE: https://www.europeancancer.org/eu-projects/impact/smartcare.html - PanCareSurPass: PanCare Survivorship Passport, http://www.survivorshippassport.org/ - ALADDIN https://aladdin-education.eu/ - PanCareFollowUp: https://pancarefollowup.eu/ - UNICA4EU https://unica4.eu/ - UNCAN.eu https://uncan.eu/ - Joint Action on Rare Cancers: Leading WP9 on Childhood Cancers: www.jointactionrarecancers.eu - PanCareSurfUp: www.pancaresurfup.eu - PanCareLife: www.pancarelife.eu - ExPO-r-Net: European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment: www.expornet.eu - ENCCA: European Network for Cancer Research in Children and Adolescents: www.encca.eu OTHER PROJECTS: - PPIE: “Patient and Public in Involvement and Engagement”, tailoring research to patients’ and survivors’ needs to improve quality of life, funded by Ludwig Boltzmann Gesellschaft (LBG)

Interests Represented

Does not represent commercial interests

Member Of

WeCAN https://wecanadvocate.eu/ ECO Patient Advisory Committee https://www.europeancancer.org/ EURORDIS https://www.eurordis.org/

Organisation Members

https://ccieurope.eu/network/