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Parents and Patients Advocacy Committee (PPAC)

A first meeting of the newly founded “Parent and Patient Advocacy Committee” (PPAC) took place in Vienna from 19th to 21st of July 2012.PPAC_Website

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

 

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