Highlights from the CCI Regional Europe Meeting

mAn outstanding meeting of the European branch of the confederation of parents’ organisations took place on 22-24 April 2016 in Belgrade, Serbia. Hosted by the Serbian Childhood Cancer Network, the Childhood Cancer International (CCI) Europe Regional Conference started with an introductory round for conference participants who wanted to know more about CCI and its current activities. Two training workshops, one on mentoring for survivors and one on fundraising and public relations encountered a wide success in terms of participants attendance and interactions. The first session focused on the implementation of the SIOPE European Standards of Care for Children with Cancer: best practices were exchanged, and several CCI members’ projects – covering several aspects related to the Standards, from fertility preservation to career counselling for survivors – were presented. SIOPE was also present at this important meeting, and shared the work performed to support the Standards’ implementation across Europe, especially in the framework of the ExPO-r-Net (European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment) project. The key topical subjects that emerged from the discussions  during the event were the lack of paediatric cancer registries in some European countries as well as the difficult access to essential medicines, especially for pain management and pain control during medical procedures, a very important aspect of ensuring patients’ quality of life during treatment. Paediatric cancer drug development, the psychosocial aspects of dealing with childhood cancers, long-term follow up, as well as models of parent association management were also discussed during the Conference. Finally, the impact of EU-funded projects in the field of paediatric cancers – in which also SIOPE takes part (e.g. PanCareSurfUp, ENCCA, ExPO-r-Net) – were illustrated during this Conference. A presentation from the Unite2Cure coalition of parents’ organisation ended with the plea to sign “golden letters” which have been handed over to the European Commissioner for Health and Food Safety, Dr.  Vytenis Andriukaitis, last May. lThe meeting ended on a positive and motivated note from several participants, and with a ‘call for topics’ or projects related to the European Standards of Care for next year. The next 2017 CCI Europe meeting will take place in Rome, Italy – SIOPE looks forward to being there and sharing expertise with our most valued partners – parents, patients and survivors!