Location: Vienna, Austria
Location: Cape Town, South Africa
Location: Brussels, Belgium

    Cancer in children and young people remains an important global public health issue and one that only cooperation between all stakeholders – health professionals, researchers, parents, patients and survivors, as well as political bodies, regulatory agencies, pharmaceutical companies, and fundraising charities – can overcome.

    As part of its aim to integrate all stakeholders from the European paediatric oncology community, SIOPE is therefore further developing its close partnership with engaged parent/patient and survivors advocates from all over Europe.

    Over the years SIOPE has established a direct contact and strong collaboration with the representatives of European parents, patients and survivors through the European branch of Childhood Cancer International (CCI) and the Parent and Patient Advisory Committee (PPAC, established within the ENCCA Project).

    CCI logo version 421b with text and gold ribbon straight

    In particular, the international body representing families of children with cancer, formerly known as ICCCPO, changed its name last year and it is now called Childhood Cancer International (CCI). At the last SIOP Congress in Toronto, CCI also renewed its Board and Ms Carmen Auste from the Philippines was elected as a new President (for Europe, Luisa Basset from Spain was elected). This year, CCI launched a very successful Global Campaign to mark International Childhood Cancer Day (15th February).  This collaborative campaign aimed to express support and promote deeper understanding of all issues impacting on children/adolescents with cancer, the survivors, their families and the society as a whole. As a close partner in the same fight for a better futture for children and adolescents with cancer, SIOPE organised the 2015 edition of the its International Childhood Cancer Awareness Day at the European Parliament (3rd February 2015, Brussels, Belgium). Our Society advocated better EU legislation for paediatric oncology research by particularly focusing on ‘Balancing Personal Data Protection and Research Progress: The Case of Childhood Cancer’.

    More information

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    The 2015 ENCCA General Assembly and ECRC meeting took place last 15th-16th January in the Belgian capital. This was the 4th General Assembly of the project, and the second day of the meeting also hosted a joint ENCCA-ECRC meeting which focused on the most urgent aspects concerning the implementation of the EU Clinical Trial Regulation.

    This was the perfect occasion to celebrate the major achievements obtained by ENCCA after four years as, within this timeframe, project partners managed to build a solid and well renowned network of excellence for paediatric cancer research. Last January meeting participants made an assessment of the efficacy and quality of the results achieved so far, having in mind the original project aim to improve the quality of childhood cancer healthcare, the accessibility of paediatric drugs and innovative therapies, as well as the quality of life of survivors across Europe.

    Several European-wide councils and committees have been created thanks to the ENCCA project: among the many, the European Clinical Research Council for paediatric oncology (ECRC), which managed to voice the common harmonised agenda of the clinical and research community at the European level; the Ethics' Advisory Committee (EAC), that covered very important aspects linked to treatment and follow-up; and the Parent Patient Advocacy Committee (PPAC), which represented an opportunity to strongly express paediatric oncology patients' needs in Europe. All these and other bodies will be integrated in the SIOPE structure after the end of ENCCA, in order to ensure the sustainability of the project achievements on the long-term.

    The contribution of ENCCA partners to the implementation of several advocacy campaigns led by SIOPE, such as the amendments to the Clinical Trial Regulation, has been also underlined during this meeting. Finally, participants also reminded the importance of the outcome of the SIOPE-ENCCA Conference in 2014, an important event which effectively opened horizons for a shared ambitious vision on the future of paediatric oncology in the next decade.

    All presentations showed during the last ENCCA General Assembly and ECRC meeting have now been made available for partners on the project intranet (for more information, please contact the ENCCA Project Manager, Mr Zoltán Dobai encca@ccri.at).

    ​ENCCA Closing Conference: Save the Date
    17-18 December 2015, Brussels, Belgium

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    The final event of the ENCCA project will take place at the Renaissance Hotel in Brussels, and all ENCCA partners are kindly invited to mark the following date on their calendar: Thursday 17th and Friday 18th December 2015.

    This unique event will be the only occasion for partners to show the final results of their strenuous work performed within the project, to learn from each other and to jointly discuss plans for the future. More practical information will be circulated closer to the event date, by email and on the ENCCA website (www.encca.eu).

     Introduction to ENCCA