11 – 13 of July 2013, Sarajevo (Bosnia & Herzegovina)
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 (http://www.encca.org/). This European committee of parent and survivor representatives held its half-yearly working meeting in Sarajevo (Bosnia & Herzegovina) from 11 – 13 of July 2013.
Currently, the PPAC consists 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 are found here.
Sabine Karner, project worker for ICCCPO within the ENCCA project, gave an update of the work ICCCPO has done so far and what we want to do until the end of the ENCCA project in December 2014. The work in the next one and a half year will be:
- to create a brochure about clinical trials, which will be available in several European languages (download and print),
- to train parents and patient representatives in clinical trial issues and the clinical research process in general to make them powerful advocates in this field (via meetings, existing training courses and a webinar),
- to support the creation and implementation of the survivorship passport in Europe,
- to review the ENCCA guidelines on bio banking and clinical trials, which are currently developed and
- to facilitate the networking between parent and survivors groups/ organisations within Europe.
During these days a main question was: what will be after ENCCA is finished? For Anita Kienesberger, ICCCPO board member and responsible for the European issues within ICCCPO, is the long-term sustainability of our work an important topic and therefore we need to pay attention on this in the next year. One important result of the meeting was priorities on which the members will focus were defined to which they can contribute with their special knowledge as well as gain expertise in certain fields. Beside ICCCPO’s mission “We care, we share” one important objective is to “close the gap between East- and West European countries”.
Lejla and Neira Kamerić acted as wonderful hosts of the meeting. Thus we also got insight into the culture and the way of living in Bosnia and Herzegovina after their special history and during Ramadan.
Please click to enlarge.