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.

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.

Socioeconomic Rights

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.

Surviving Survival

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. One of our latest and so far biggest projects is definitely EU-CAYAS-NET, with several topics concerning Quality of Life with and beyond cancer.

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. One of the important deliveries of this project was also the development of so-called PLAIN brochures, which explain different surveillance guidelines in lay language and educate survivors as well as HCPs about possible late effects and their symptoms.  In parallel we are contributing to the development of the IGHG Guidelines and have been involved in the Survivorship Passport project in the last 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.

Regularly, in preparation for the SIOP Europe Annual Meeting in partnership with CCI Europe, as well as for any other official conferences, we are responsible for the survivors’ input and organisational aspects of the programme planning. You can check the current programme here.

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.

Want to know more and get involved?
Get in touch with us: office@ccieurope.eu


Survivors Week


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.