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European Roadmap 2020 – the Parents and Survivors Organizations’ Perspective

Malmö_largeEuropean Roadmap 2020 – the Parents and Survivors Organizations’ Perspective

by Sabine Karner and Gerlind Bode,

„Alone we can make some difference, but together, we can make sustainable changes“ was the motto of the 6th CCI Europe Regional Meeting, which took place in Malmö (Sweden) from 8 – 10 of May 2015.

This annual CCI Europe Regional Meeting was a unique opportunity for parents, survivors and representative from childhood cancer organizations to get together and learn and exchange information with representatives from other European groups. This time it were 99 participants from 23 countries who shared their information and experiences – in a way a big success as we started five years ago with 20 participants from a handful of different countries. And this year we could welcome many new people – about a third of the participants attended a CCI Europe Regional Meeting for the first time.

After a very warm welcome by Holly Wattwill, local host from the Swedish childhood cancer organization Barncancerfonden Södra, and CCI Europe Regional Committee representatives Luisa Basset (as member of the CCI-board) and Anita Kienesberger (CCI-Europe). Annika Brocknäs and Anders Faremo gave some insight into the activities of Barncancerfonden in Sweden at the regional as well as national level. Notably the Swedish School Program was a very impressive example of the professional approach of this organization.

Long-term Follow-Up – Where are we going?

Lars Hjorth, pediatric oncologist and specialist in late effects from Lund-University (Sweden) as well as Chair of PanCare addressed the needs for appropriate follow up for survivors. He expressed his concerns that Long-Term Follow-Up (LTFU) is very fragmented in Europe and even non-existing in many places, and there are often big differences even within a given country. A very ambitious project is the creation of the survivorship passport (as part of the ENCCA-project). And a lively discussion started with reference to the implementation of the passport in the different countries. There is a high need for parents, survivors and doctors to work together and lobby for funding and implementation of this important tool into the national health care systems.

Together for a European Long-Term Strategic Plan

Gilles Vassal, SIOP-E president presented the „Roadmap to Horizon 2020 and beyond“ which aims for a sustainable childhood cancer plan in Europe. This roadmap includes seven medical and scientific objectives for pediatric oncology, such as: how to improve quality of survivorship and introduce innovative treatment in multidisciplinary care. SIOPE and CCI Europe Regional Committee will be co-operating in the implementation of a European long-term strategic plan and will raise awareness about cancer in children and adolescents. Therefore both partners will sign a Memorandum of Understanding in the near future.

There was the opportunity to give insight and updates about the ongoing EU funded projects, like ENCCA, ExPO-r-Net, PanCareSurFup, PanCareLife and IntReALL. Find more information about the ongoing EU funded projects here.

Psychosocial Support for Survivors

Two survivors from Luxembourg presented the results of their film-workshop „Hope for a Cure“. Four heartwarming video clips addressed the cancer treatment and dealt with late effects from a survivor’s perspective. Sabine Karner presented a special career counseling project for survivors in Austria which will be the basis for a new EU-funded project called „Create your Future“. It will start with scientific investigations of the hurdles and needs of survivors in education, school, job; and social life and secondly, a career counseling project will be transferred to the project-countries Bulgaria, Spain and Greece.

Caroline Scott, from the well known Barretstown-Camp in Ireland presented how research impacts program development at Barretstown-Camp. In 2014 a new program, called „Growing Camp Connections“, was developed because of research done by Yale University across all “Serious Fun Children`s Network Camps”. The overall aim of the camp sessions is to support children in order to sustain high levels of confidence and self-esteem when reintegrating into their local communities after having been at camp.

A demonstration of music composed, played and sung by a group of survivors in Luxembourg, presented by Anne Goeres (L) was a fitting round-up of this session.

Challenges in Research and Drug Development

A very engaged discussion and interaction was stimulated by presentations of Patricia Blanc (F) and Cesare Spadoni (UK) on the urgent need for new drugs in the treatment childhood cancer and their respective ways to approach this challenge. There will be joint actions worked out and presented to the CCI-Europe groups to lobby at national and international levels.

Survivors’ Session

Aimilia Tsirou and Neira Kameric organized a survivors’ session, which started with an active part for the 28 participating survivors to get to know each other.  After this the group was divided into three brake-out groups: long-term follow-up, survivors association and education/training for survivors. Overnight, Neira had created a wonderful video clip from this session and presented it to the whole audience. It summarizes the session, and survivors expressed their views on survivorship.

Teenagers and Young Adults’ Needs

Sue Morgan, consultant nurse from Leeds (UK) presented the outcome of a survey in which teenagers and young adults (TYA) from all over Europe had been asked for their opinion on the existing and the wished-for situation of TYAs in treatment. The survey showed that teenagers and young adults have unique needs and that these have to be addressed by professionals and parents/patients groups. Luckily, a European push for collaboration has come through the ENCCA network. The results of the survey will be published soon.

After this Angelo Ricci (Italy) showed how the national Italian parent group could successfully lobby for improvement of care for TYAs in Italy.

Chris Copland (UK) demonstrated the importance of the parent’s voice and the collaboration across the boarders when it comes to new strategies in very rare diseases such as Ewing Sarcoma. And Danielle Horton Taylor (UK) invited everybody to get involved in designing short, und comprehensible information on clinical trials as well as consent/assent-forms.

Future direction

Much information was presented and shared. 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 Swedish parent organizations Barncancerfonden Södra had perfectly organized this wonderful weekend. A heartfelt “Thank You” to Holly Wattwil, Annika Brocknäs, Anders Färemo, Christoffer Dehman and Mia Persson for their warm welcome and hospitality, which made our stay unforgettable.

Actually, we can already invite you to the next CCI Europe Regional Conference in Belgrade (Serbia) in 2016 (exact dates to be announced soon) and would love to see you all again.

Anita Kienesberger, Holly Wattwil, Sabine Karner
Luisa Basset, Patty Brouwer, Frédéric Arnold, Lejla Kamerić, Aimilia Tsirou, Neira Kameri
ć, Peter Lack, Gerlind Bode and Marianne Naafs-Wilstra (The organizing committee)

Some photos of the meeting:

Please click to enlarge.

CCI Europe Malmö 2015 (18) CCI Europe Malmö 2015 (10) CCI Europe Malmö 2015 (11) CCI Europe Malmö 2015 (14) CCI Europe Malmö 2015 (12) CCI Europe Malmö 2015 (13) CCI Europe Malmö 2015 (1) CCI Europe Malmö 2015 (15) CCI Europe Malmö 2015 (17) CCI Europe Malmö 2015 (16)

CCI Europe Malmö 2015 (24) CCI Europe Malmö 2015 (22) CCI Europe Malmö 2015 (7) CCI Europe Malmö 2015 (19) CCI Europe Malmö 2015 (27) CCI Europe Malmö 2015 (8) CCI Europe Malmö 2015 (28) CCI Europe Malmö 2015 (21) CCI Europe Malmö 2015 (5) CCI Europe Malmö 2015 (23) CCI Europe Malmö 2015 (4) CCI Europe Malmö 2015 (25) CCI Europe Malmö 2015 (20) CCI Europe Malmö 2015 (9) CCI Europe Malmö 2015 (3) CCI Europe Malmö 2015 (2) CCI Europe Malmö 2015 (6)

Download presentations of the 6th CCI Europe Regional Meeting:
Session Presentation
Session 1: Sweden and Childhood Cancer
Session 2: Long-Term Follow-Up: Where are we going?
Session 3: CCI and SIOPE partnership in Europe
Session 4: CCI news/Topics from the member groups
  • News from CCI Europe Regional Committee (PPAC)
  • Swiss childhood cancer organizations team up to tackle common issues nationally (and found new umbrella association), Peter Lack
  • European Standards of Care – only a paper?! (Irina Cepinac-Ban and Lejla Kameric)
Session 5: Psychosocial issues
Session 6a: Challenges in research and drug development for parents, patients/survivors
  • To ask or not to ask: Assent and consent issues in pediatric oncology clinical trials (Danielle Horton Taylor)
  • Pediatric oncology platform: How parents can help developing new drugs (Patricia Blanc)
  • A role for parents` organisations in drug development (Cesare Spadoni)
Session 6b: Session for Survivors Break out groups: long-term follow-up, survivors association and education/training for survivors and a video clip from this session was created and presented to the whole audience.
Session 7: Teenager and Adolescents
  • Teenager and Young Adults: Outcome of TYA care and results of an ENCCA survey about the involvement of parent and patient groups in Teenage and Young Adults with Cancer in Europe (Sue Morgan)
  • Euro Ewing`s: The voice of parents and patients in a European research trial (Christopher Copland)
  • “What TYA deserves” – Efforts in Italy about TYA (Angelo Ricci)
Session 8: CCI news
Childhood Cancer Institution | CCI Affiliates
Childhood Cancer International