Schengen in Luxembourg was a perfect location for this third EU-wide ICCCPO meeting as the little town is known for the ‘Schengen Agreement’, signed by the majority of EU- member states to allow free travel across European boarders for all EU citizens or those holding a Schengen-visa. We take it for granted these days; but some of us can still remember the times, when travelling was much more troublesome with waiting times and passport control at the boarders.
42 parents and survivors (from 16 different countries) found their way to the impressive youth-hostel in Remerschen-Schengen, where the Luxembourg parent initiative (Een Häerz fir kriibskrank Kanner) had perfectly prepared everything including pick-up service from the train station and the airport. And an intense weekend with many topics and workshops on the agenda could start. In the focus of attention were the different EU-projects in which ICCCPO is an active partner (ENCCA, IntReALL, EPOC and PanCareSurFup). Ideas for the International Childhood Cancer Day were exchanged, the progress of the so called Survivorship Passport was discussed and ethical questions in connection with consent giving for bio-banking. A report on home care and an update of the planned central pediatric oncology center in the Netherlands as well as many other urgent issues were on the agenda. The tight relationship to organizations such as SIOP-Europe (thus also to ECCO) and World Child Cancer were stressed. ICCCPO members are asked to become actively involved with lobbying for changes when the new ‘Directive on clinical trials’ is up for discussion at the EU-legislative level. And in its own way, an important milestone was the founding of a Parent and Patient Advocacy Committee (PPAC) which will convene to discuss and decide on ethical and practical issues related to regulations and the demands within Europe. This committee is composed of parents as well as survivors and will meet regularly as well as on demand.
Since we stayed close to the Mosel River – in midst a large and famous wine growing area -, a wine tasting had to be part of the program. It perfectly opened up the first evening for easier and more relaxed communication among the participants and contributed to the atmosphere. Our sincere thanks are going to Marie-Marthe Bruck-Clees and her team from the Luxembourg group ‘A Heart for Children with Cancer’. They did a perfect job.
For more information about the projects go to:
Newspaper article about ICCCPO Europe Meeting: Wort.lu
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