CCI Europe Conference: a long-awaited meeting

After three long years of social distancing, the Childhood Cancer Community finally managed to meet up again personally at this year’s CCI Europe Conference in Vienna. As the largest pan-European umbrella organisation, CCI Europe represents the interests of survivors and parents in international projects and in EU policy. With around 80 participants, it was the first “in person” conference since 2019. Lots of those taking part had been working together for months, but only knew each other from virtual meeting rooms. The atmosphere at the conference was incredible from the beginning on Friday lunchtime. In keeping with the motto “Goodbye home office look!”, pyjama trousers were symbolically taken off at the official opening and the conference started with a poster session from the respective strategic areas of Childhood Cancer International Europe. This made it possible to familiarise all participants with the various projects and initiatives at European level and also create a basis for the following discussions.

Zuzana Tomášiková, Head of the Childhood Cancer Switzerland Survivors’ Centre, presented the area of Survivorship which, as a Member of the Board of CCI Europe, she also represents at international level. Interesting projects from member organisations from all over Europe were presented over the course of the three days in individual sessions. Two of the particularly impressive presentations concerned a training programme on advocacy for survivors in Belgium as well as the achievements at a legal level for the bereaved and mourning parents in Portugal. Furthermore, survivors should be given the statutory right “to be forgotten” and, after a certain period of time, not have to specify their illness vis-à-vis credit institutions and insurance companies, thus counteracting discrimination. In turn, other projects dealt with relief for family life during acute therapy, for example with regard to everyday planning or to simple graphic therapy protocol aid for children from the age of 4.

Two panel discussions rounded off the conference programme. In the first one, the success of as well as the challenges for SAFER Ukraine were discussed. This amazing project is a response to the war in Ukraine. It involved sending almost 1,000 Ukrainian children with cancer and their families to other countries so that they can continue their therapies there. The second discussion focussed on the subject of the European Reference Network (ERN). The focus was on cross-border knowledge transfer. The aim is to share medical expertise across borders, first using virtual tumour boards. Families should only travel abroad with affected children if the necessary treatment is not available in their home country.

Furthermore, the General Data Protection Regulation (GDPR) and its effects on and implications for research were also discussed. The central issue was a discussion on where the community could see potential for improvement in terms of implementation. One of the last sessions focussed on the subject of self-care. There were also some networking offers which enabled a more personal and bilateral exchange among the participants.

The CCI Europe Conference is seen as the most important exchange platform for the Childhood Cancer Community. Alongside informative and interesting presentations, best practice examples and various discussion forums, it provides valuable food for thought, enables the transfer of knowledge and promotes networking – an ideal opportunity to work on common challenges and grow.