A first meeting of the newly founded “Parent and Patient Advocacy Committee” (PPAC) took place in Vienna from 19th to 21st of July 2012.
This special committee was established a few months ago within the EU funded ENCCA project, which aims to establish a sustainable structure within the paediatric oncology in Europe (http://www.encca.org/).
The PPAC consists of parent and survivor representatives from France, Spain, Germany, Bosnia and Herzegovina, Switzerland, Luxembourg , Austria and Greece. At the first meeting the members had enough time to discuss the aims, next steps and decided on ethical and practical issues related to regulations and the demands within Europe. This committee will meet regularly as well as on demand.
Members of Parents and Patients Advocacy Committee (PPAC):
| Who | Parent organisation/Survivor representative | Country |
|---|---|---|
| ARNOLD Frederic | UNAPECLE | France |
| BASSET Luisa | FEPNC – Federacion Española de padres de Niños con Cáncer | Spain |
| COSTELLOE Jacqueline | Een Häerz fir kriibskrank Kanner | Luxembourg |
| 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 |
| KARNER Sabine | Österreichische Kinder-Krebs-Hilfe/Survivors Austria | Austria |
| KIENESBERGER Anita | Österreichische Kinder-Krebs-Hilfe | Austria |
| LACK Peter | Kinderkrebshilfe Schweiz | Switzerland |
| PFEIFER Renate | Förderkreis für krebskranke Kinder und Jugendliche Bonn e.V. | Germany |
| TSIROU Aimilia | Kytarro – Greek Survivors Association | Greece |
| Advisors: | ||
| BODE Gerlind | Förderkreis für krebskranke Kinder und Jugendliche Bonn e.V. | Germany |
| NAAFS-WILSTRA Marianne | VOKK | Netherlands |
