by Gerlind Bode, ICCCPO advisor

The annual ICCCPO conference was held jointly with the  Congress of the International Society of Paediatric Oncology (SIOP) in London (United Kingdom) from October 4th – 8th, 2012.


Oh, yes – it was great, actually in parts too good, too busy, too many interesting things going on at the same time, which made it hard to choose between the ICCCPO representations and the topics from the general SIOP-program. But, yes, it was good – and one always has to make sacrifices. The room was packed most of the time – not only by parents and survivors, but also by many professionals. As London was (relatively) easy to get to for many people – not only from Europe, there was a record attendance. The program, set up mainly by Val Figliuzzi (Canada) and Anders Wolmén (Sweden) encompassed topics like the 5-year report of World Child Cancer about successfully supporting projects in developing countries, on medical information, on long-term effects, the importance of healthy life-style, early detection campaigns, and on organizational strategies for parent support groups such as how to keep a group going and fundraising issues. Impressive in that area was the contribution of the South African group ‘The Cows-People’ who presented a very unique way of successful fundraising.

Delegates from all around the world, from almost all European countries but also as far as India, Bangladesh, Africa, USA, Canada, Latin-America came to listen, to exchange and interact. And it was good to see many ‘old’ faces among them besides all those new ones from known as well as new groups. Our local hosts, the Childhood Cancer Parents Alliance UK (CCPA), especially Abby White and Rachel Olley have done a tremendous job to find nice places for the Meet&Greet as well as the ICCCPO-Dinner and organized those events perfectly. The only setback of the record attendance was the mere fact that it was impossible to get them all into one picture! But still, both events were again perfect opportunities to ‘mingle’ and get known to each other. So, many thanks to all involved in the organizational part und our gratitude to all the kind sponsors!

At the ICCCPO annual General Assembly, two board positions had to be filled as Irina Ban’s (Serbia) term was running out and Val Figliuzzi stepped down. However, as only one nomination had reached the board in time, only one position could be filled and Marcela Zubieta (Chile) was elected by the assembly. 15 new organizations were admitted and 5 dropped from the membership list as they could no longer be contacted. Which means that ICCCPO now counts 158 member groups from 85 countries.

This year around 30 survivors from 17 countries attended the conference and as usual some sessions were especially for survivors. Sabine Karner and Michaela Willi, who were responsible for the survivors programme tried to make diversified sessions. The topics ranged from country reports of national survivors activities and initiatives, comparison of mentoring projects, how to establish a survivors group and keep it going to a workshop how to raise more awareness in childhood cancer. Additionally this year was an involvement of external presenters: Jean-Claude Dupont gave an overview of the views from parents and patients about tissue-banking and Stefan Essig presented current results of his research about the “Quality of web-based medical information for childhood cancer survivors.

After all those pre- and post-meetings, the numerous board- and ad-hoc meetings most of us were extremely tired and ready to go home – not without the sincere feeling: we should have had more time to cover more and should have had more time to talk with others. But isn’t that always the fact? Now we will have to ‘digest’ what we heard and saw and prepare ourselves for next year’s meeting in Hong Kong.

Save the date: 45th SIOP Congress 25 – 28th of September 2013
The Annual Report 2011/12 is available as download here.

Presentations ICCCPO Conference London 2012:

Title Author Download
The Presenters have kindly agreed to make their material available on this site. Please send us your presentation, if you would like to share it (
Update from World Child Cancer Gordon Morrison, Liz Burns, Anu Vedi pdf
ICCCPO Regional Cooperation – Childhood Cancer Parent Organisations from Former Yugoslavia Irina Ban pdf
Explaining Cognitive Late Effects: A model to share with others Adrienne Witol pdf
Awareness for early detection of childhood cancer – The Romanian Model Olga Cridland pdf
The sibling support project Eva Salqvist pdf
Sisom: Interactive communication support to help children with cancer communicate their illness experiences and improve consultations Cornelia Ruland pdf
Developing resilience groups – Practical tools to bounce back & thrive Adrienne Witol pdf
Familiy volunteers in your organisation Marianne Naafs-Wilstra pdf
How to get parents involve in their organisation – Experiences from Japan Kohsuke Yamashita pdf
Empowering parents to become advocates Julia Challinor pdf
Needs and Expectations of Childhood Cancer Survivors – Review by the Dutch Parent organisation VOKK Marianne Naafs-Wilstra pdf
Survivorship passport – An update Sabine Karner pdf
Meet the Expert panel on Late effects Lars Hjorth pdf