The “Parent and Patient Advocacy Committee (PPAC)” was founded within the EU funded ENCCA project, which aims to establish a sustainable structure within the paediatric oncology in Europe ( This European committee of parent and survivor representatives held its half-yearly working meeting in Brussels (Belgium) in mid-September 2014.PPACmeeting_Brussels_small

From 18th-19th of September 2014 the SIOPE-ENCCA Conference was held, which is the first event of its kind that sets out to address the most urgent issues in paediatric cancer. The community presented the European Roadmap to Horizon 2020, which plans to increase cure rate and quality of cure (More you find

This conference was a very good opportunity for the current Parents and Patients Advocacy Committee to meet before and after the conference. SIOPE supported the PPAC meeting and everyone enjoyed their hospitality. The PPAC consists at present of parent and survivor representatives from France, Spain, Germany, Bosnia and Herzegovina, Switzerland, Luxembourg Austria and Greece. The names and represented organisations of the members can be found here (Read more).

One of the most important questions during these one and a half days was: what will happen to the PPAC after the ENCCA-project is finished in December 2015? For Anita Kienesberger, ICCCPO board member and responsible for the European issues within ICCCPO, the long-term sustainability of our work is an important topic. Now we have 12 months left and it is time to define the future structure of this European Parents and Patients Advocacy Committee within the international ICCCPO organisation.

This fruitful meeting led to concrete proposals with respect to the needs of an “ICCCPO Task Force Europe”, which should keep a strong bond with the ICCCPO-board. Additionally, it is needed to think about the future nomination procedure for members of this task force, of concrete activities and goals etc. Everyone agreed that this will be a very lively process in the upcoming months. As the SIOPE-ENCCA conference showed, there are a lot of important issues, which need to be dealt with, because only then it is possible to close the gap between East- and West European countries in paediatric cancer treatment and care and aim for higher cure rates and better quality of life for all children and adolescents with cancer in Europe.

Current members of Parents and Patients Advocacy Committee (PPAC):
Who Parent organisation/Survivor representative Country
BASSET Luisa FEPNC – Federacion Española de padres de Niños con Cáncer Spain
KAMERIĆ Lejla The heart for the kids with cancer in FBiH Bosnia and Hercegovina
KAMERIĆ Neira The heart for the kids with cancer in FBiH/Cancer Survivor Network Bosnia and Hercegovina
KIENESBERGER Anita Österreichische Kinder-Krebs-Hilfe Austria
LACK Peter Kinderkrebshilfe Schweiz Switzerland
TSIROU Aimilia Kytarro – Greek Survivors Association Greece
BODE Gerlind Förderkreis für krebskranke Kinder und Jugendliche Bonn e.V. Germany
NAAFS-WILSTRA Marianne VOKK Netherlands
Project worker:
KARNER Sabine Österreichische Kinder-Krebs-Hilfe/Survivors Austria Austria