Valencia (Spain), 16 – 18 of May 2014
Together we are strong was the motto of the fifth ICCCPO meeting of European member groups, which took place in Valencia (Spain) from 17 – 18 of May 2014. The meeting started with the celebration of ICCCPO’s 20th anniversary.
This weekend was a unique opportunity to meet parents, survivors and other dedicated people within the paediatric oncology community.
ICCCPO is 20 years old
ICCCPO was founded 1994 in Valencia; so it made sense to celebrate this very special anniversary there, too. Some of the founding members like Jesús Mª González Marín (Spain), Marianne Naafs-Wilstra (The Netherlands) and Gerlind Bode (Germany) were present. More than 100 people participated in the ceremonial act at the Placa de Pineda, a historical building in the old town of Valencia. Representatives from European parent- and survivors-organisations, the entire ICCCPO board, SIOP’s past president, Gabriele Calaminus, several founding and honorary members of ICCCPO as well as Spanish local and regional politicians were present.
Kenneth Dollman (ICCCPO president) emphasized in his speech that we are privileged to share with the original founding members the joy of seeing a small organization grow into what it is today. In 1994, ICCCPO started out with 11 member organisations – today in 2014, there are 171 members from 88 countries. This shows the importance of this organisation’s goals: to share information and experience in order to improve the access to the best possible treatment and care for children with cancer everywhere in the world.
Gabriele Calaminus mentioned in her speech the essential role of parents’ organizations: “Especially the commitment of parents made it possible to build up the resources in many hospitals in order to establish paediatric cancer facilities and to finance enough staff and sufficient equipment. From early on, the availability of adequate psychosocial support for patients and families was in the focus of the parents initiatives.”
In a power point presentation Marianne Naafs-Wilstra highlighted the history of ICCCPO. It was wonderful to see the development of the organisation throughout the years with numerous events and activities. The ceremonial act was followed by a guided tour through the old town of Valencia and concluded in a lovely dinner at the congress hotel – all together perfectly organized by the Spanish local and national group.
Fifth European regional meeting
The agenda of this one-and-a-half-day meeting of European groups was fully packed with interesting topics, ranging from ICCCPO/SIOPE collaboration and the need for political advocacy in health issues, the update on EU-related issues, research for new medicines, needs of teenagers and adolescents, and other interesting topics from the member groups.
Gilles Vassal, SIOP-E president, joined the meeting and presented the current European health-policy topics. He showed nicely how the partnership between SIOP-E and ICCCPO intensified in recent years. Two new EU funded projects were introduced to the participants: ExPO-r-Net and PanCareLIFE. The first one will link pre-existing reference centres of excellence and seek mechanisms to facilitate exchange of information and knowledge rather than patients (through information and communication technology tools and e-Health). This will result in better access to high-quality healthcare for children whose conditions require specialised expertise which might not be available in their home country (either due to low case volumes or lack of local resources). The PanCareLIFE project does observational studies to investigate late effects affecting fertility and hearing impairment (ototoxicity). In addition, the researchers aim to determine the impact of these complications on the health-related quality of life of former patients. Information from PanCareLIFE studies will be incorporated into new guidelines for fertility preservation.
More information about the ongoing EU funded projects you can find here.
First European Survivors session
For Saturday afternoon a special survivors session was scheduled, attended by approximately 30 survivors. Sabine Karner and Aimilia Tsirou gave a summary of the different survivor group activities of the past year and showed the current communication tools of ICCSN-Europe. This was followed by presentations from national survivor groups, such as Austria, Bosnia & Hercegovina, Greece, Germany, Croatia, Serbia, Romania, Spain, Sweden, The Netherlands and Switzerland. Establishing survivors groups and intensifying the network of survivors are among the most important aims of ICCSN-Europe.
Role of parent groups in research
Parallel to the survivors` session the parent programme focused on parents’ and patients’ involvement in drug development and clinical trials. Several members of ICCCPO-Europe are patient representatives in different EU-funded projects such as IntReALL, PanCareSurfup and GAPP and talked about the development in those projects. Interesting were the presentations by Danielle Horton Taylor (UK) who is involved in a group of parents responsible for approving patient information and consent forms for clinical trials, and by Christopher Copland (UK) about parent/patient involvement in clinical research. A special plea for support came from Patricia Blanc (France) for an initiative started by a joint BDA/SIOP-E/ITCC/ENCCA-workshop (BDA= Biotherapy Development Association) for speeding up drug development for paediatric cancers with possible incentives for pharmaceutical industry.
After a late evening with a wonderful dinner in a restaurant near the beach it was not easy to get into working mode on Sunday morning. But the burning topics led to lively discussions in the two workshops. Marianne Naafs-Wilstra asked for input concerning the special care needs of teenagers and adolescents as this will be a rising issue within Europe. In countries like the UK, Spain, Italy, France and Germany teenagers, adolescents and even young adults are usually included in paediatric clinical trials, as it is documented that they have higher survival rates than those treated according to adult protocols. The second workshop was about “Long-Term Sustainability and the views from ICCCPO members.” The participants were asked to name and group future topics ICCCPO should work on and lobby for in the political scene of Europe.
In total, the weekend was characterized by “looking back” and “looking forward.” The present essentials of the work of childhood cancer organizations all over the world where highlighted as well as the specific needs in Europe and goals set for the future. Much information was presented and shared, and almost everybody left with new ideas and goals and the feeling to be part of a larger movement for the common aim: to improve the situation of children with cancer in Europe and beyond.
The Spanish parent organisations, FEPNC and ASPANION, had perfectly organized this wonderful weekend. A heartfelt “Thank You” to FEPNC and ASPANION for their warm welcome and hospitality, which made our stay unforgettable. And a special big “Thank You” to Luisa Basset and her team! We are excited to look forward to the next 20 years.
Actually, we can already invite you to the next ICCCPO Europe meeting in Sweden in 2015 and would love to see you all again.
Anita Kienesberger, Luisa Basset, Patty Brouwer, Sabine Karner, Marianne Naafs-Wilstra, Gerlind Bode and Lejla Kamerić (The organizing committee)
Presentation about the history of ICCCPO
Some pictures of the 20th anniversary and the ICCCPO-Europe meeting:
Please click to enlarge.