About our pillar:
Up to ⅔ to ¾ of childhood and adolescent cancer survivors are confronted with late-effects of their cancer and its treatment. These late-effects can affect the whole organism and psychosocial wellbeing. In addition, many survivors face socioeconomic discrimination due to their prior illness.
Mission of the Survivorship Pillar is to raise awareness about these pressing survivorship issues, to improve quality of survivorship by advocating for better and comprehensive education about late-effects, by supporting the development and implementation of follow-up care and by advocating against socioeconomic discrimination.
What we advocate for
Follow Up Care & Late Effects
Our goal is to improve and establish long term follow up (LTFU) care standards and improve or create access to LTFU care.
Main goal is to identify socioeconomic burdens in daily life of survivors and to improve socieconomic status for disadvantages survivors.
We aim towards reaching our goals by participating in projects,
taking seats in advisory boards, reviewing LTFU Guidelines proposals,
educating and spreading awareness & building strong
survivors’ advocacy group across Europe.
This is us!
As a team of 11 survivor representatives from different European countries (and their respective national groups), we represent the survivor’s voice within the CCI Europe community.
We are patient advocates, who passionately work and represent survivors on this highly important topic of survivorship.
Our professional backgrounds range from psychologists to engineers and reflect to some extent the heterogeneity of the survivors’ community. Besides being experts on our own diagnosis and survival, we are actively involved in international projects, in our national and regional organisations as well as in the work with survivors at the local level.
Driven by the fact that all of us have been affected personally by cancer in childhood or adolescence, we are keen on changing and improving survivorship for childhood cancer patients in our countries, and across Europe.
Therefore, we focus our resources on active collaboration with professionals from SIOP Europe and PanCare, primarily dealing with the challenges in long-term follow-up care.
The spotlight is on long-term follow-up care in the focus
The visibility of long-term follow-up care as well as survivorship issues have increased continually in the field of the paediatric oncology within the last years. The contribution from patients’ and parents’ representatives meanwhile has become an essential part in several Europe-wide projects on the topic of survivorship.
Since the kick-off of our network in 2016, we have been involved continually in several EU-wide projects and initiatives, as part of CCI Europe and through the PanCareFollowUp project. Prior to that, we have provided feedback on JARC documents and have been involved in the Survivorship Passport project in the past two years.
Our opinions and experiences provide valuable contributions to research, projects and awareness campaigns on survivorship issues and we are ready to share our expertise.
In preparation for the first SIOP Europe Annual Meeting, in partnership with CCI Europe, we are responsible for the survivors’ input and organisational aspects of the programme planning.
Collaboration | internationally and nationally
Our network, the inputs that it provides and the outcomes it delivers depend on what is brought up by the national and local survivors groups. That’s why another important objective of the CCI Europe Survivors Network is to support national survivors’ groups in their development- and implementation processes.
Often, the wheel already exists and doesn’t need to be re-invented: We try to foster and support the exchange of experiences and best-practice projects across our members.
What is Survivors Week about?
Survivors Week is to celebrate childhood cancer survivors, raise awareness on challenges they go through and advocate for improving the quality of life after cancer.
Survivors Week takes place every last full week of June.
#SurvivorsWeek2022 Survivors Speak Up
Member of CCI Europe’s Survivorship pillar, Tiago Costa, speaks up and talks about his experience on advocating for survivorship issues on the European level.
Survivorship Webinar 2022
CCI, SIOP and St. Jude organized the Survivorship Webinar as part of the Survivors Week 2022. The webinar was focused on late effects and mental health, presenting challenges and solutions. Click on play to watch the webinar.
Jaap and Carina talk about late effects after treatment
Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or the European Health and Digital Executive Agency (HaDEA). Neither the European Union nor the granting authority can be held responsible for them.