The annual ICCCPO conference was held jointly with the Congress of the International Society of Pediatric Oncology (SIOP) in Hong Kong (China) from September 25th – 28th, 2013.
The venue was very well chosen and everything perfectly organised. Only for some of us the arrival to Hong Kong took longer than planned because of the typhoon a few days before the congress.
Childhood cancer on global agenda WHO
More than 1400 participants could enjoy an imposing SIOP opening ceremony. Alison Chui-yee YU and Gary Ka-wing NG, two childhood cancer survivors, perfectly moderated the opening ceremony. Some wonderful compositions by doctors, nurses and administrative staff of the “Hospital Authority Chinese Orchestra”, by childhood cancer patients and survivors of the “Little Life Warrior Society Choir” were performed and ended in an amazing lion and dragon dance.
Thanks to the good collaboration between SIOP, ICCCPO and WHO the global action against childhood cancer was an important issue during the conference days. Oleg Chestnov, assistant Director General of the World Health Organisation (WHO) attended the congress and gave a key note lecture. Childhood cancer is now on the WHO priority list and WHO is strongly committed to support national efforts to control childhood cancers in low- and middle-income countries in order to reach all children in need, wherever they are excluded or ignored. Dr Chestnov mentioned the key role of parent organisations in this effort (link article South China Morning Post).
Important daily work topics for childhood cancer organizations
More than 90 parent and survivor representatives attended the congress. Delegates from all around the world, from many Asian countries but also as far as Africa, USA, Canada, Latin-America, and Europe came to listen, to exchange and interact. A varied program was set up by Anders Wollmén (Sweden), which encompassed workshops and free paper presentations. During the workshop day the following topics were addressed, which are very useful for the daily work of a childhood cancer organization:
- Ruth Hoffman and Dan Mornar arranged „A childhood cancer parent roundtable: Opportunities for engagement and empathy”, where sensitive lobbying topics were discussed.
- „Capacity Building workshop for social support team” was managed by Poonam Baghai.
- Carmen Auste and Edith Grynszpancholc presented the outcome of the ICCCPO survey earlier this year and made us all “Work together for improved access and availability of childhood cancer drugs and medicines”.
- Marcela Zubieta and Adri Ludick held a workshop on “School during Treatment”. We got an idea of where hospital education exists and collected ideas about what is needed for those countries; where there are no hospital schools yet.
Beside the workshops, presentations were given, which range from a Vietnam Family Group project, the Rotary`s Initiative, Gender Bias in India – The perspective of a girl survivor, Twinning project between Pau Kwong Wun Charitable Foundation and Guangzhou Gold-Ribbon Children Parents Center, Establishing Family Houses in Java and Bali and a dedicated project from Ugam, the Indian survivors organization, that developed an educational program to empower survivors.
„Eat up your greens! – The importance of nutrition in childhood cancer during and after treatment” was the topic of the joint nurses and parent symposium, where latest study results and experiences of parent representative and survivors were addressed. The vivid discussion showed the key role of nutrition and the importance to involve patients/survivors and parents to provide information and advice to families.
A big thank you to Benson and his team
Benson and Ammy Pau and their team from the Pau Kwong Wun Charitable Foundation were wonderful hosts. They did a tremendous job to find nice venues for the Meet & Greet as well as the ICCCPO-Dinner – to make our stay memorable and unforgettable.
Gabriele Calaminus, SIOP president, Giorgio Perilongo, SIOP president elect, Oleg Chestov, WHO director general and Dr. Chi-Kong Li, chairman of the local organizing committee attended the ICCCPO dinner and enjoyed with us an evening with a wonderful food and lovely fringe events. Highlight of the ICCCPO dinner was the signing of a Memorandum of Understanding which marked the longstanding relationship between SIOP and ICCCPO.
ICCCPO General Assembly
At the ICCCPO annual General Assembly, two board members stepped down from the ICCCPO board: Anders Wollmén, after having served five years, and Simon Lala, after having served 15 years. A very touching moment was the unanimous approval of Simon Lala as Honorary Member. The AGA assembly elected two new board members: Ruth Hoffman (USA, American Childhood Cancer Organisation) and Poonam Bagai (India, Cankids…kidscan). Edith Grynszpancholc`s term would have ended, but as this would have left us with to two vacant positions, a special resolution was approved to prolong her position with an additional year. 20 new parent organizations were admitted and 7 organizations were dropped from the membership list as they could no longer be contacted or wished to end their membership. This means that ICCCPO now counts 171 members from 88 countries.
Program for Survivor groups
This year more than 30 survivor group delegates from 13 different countries attended the conference. The survivors program started with a social activity organized by enthusiastic Survivors from Hong Kong. They arranged a trip to the Peak by a famous funicular railway. The Peak is Hong Kong`s most popular attraction and offers an amazing view over the city. Additionally, a one day program was organized by Sabine Karner, Michaela Willi, Jaap den Hartogh, Meike Naafs and Dorothee Schmid (ICCSN Committee). The sessions ranged from reports of national survivor groups to presentations by professionals:
- Dr. Rever Li, pediatric oncologists from Hong Kong, gave an overview of possible late effects after childhood cancer treatment and the role of long-term follow-up
- “Identity and the Adult Survivor of Childhood Cancer: Defining ´Self` after Surviving” was the topic of Andrea Patenaude, who is a clinical and research psychologist at the Dana-Farber Cancer Institute.
- Examples of collaboration between doctors and survivors were shown both from the Dutch and the Indian perspective
Finally, after three days presentations, networking possibilities, meetings and gatherings, the Closing Ceremony was a nice ending of a wonderful congress. We look forward to next year’s congress, which will take place in Toronto (Canada) from 22 – 25 of October 2014.