NOTHING ABOUT US WITHOUT US!
The CCI-E Survivors Network – advocating for better survivorship.
Survivors Network:
The Survivors Network of CCI Europe consists of survivors-representatives of numerous survivor groups and organisations over Europe.
All of them are member organisations of CCI Europe. Together, we share resources and experiences to make sure that survivorship-topics are being brought to the European level: We collaborate, advocate and work towards making a change for the better for every survivor in Europe.
We have a vision | and with that comes our mission
Our common vision is that every survivor of childhood cancer can live their life in the best quality possible.
With that in mind, our mission is to improve the quality of survivorship – and with that the lives of survivors.
Introducing | Our network
As a network of almost 20 survivors-representatives from 13 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.
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.
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↠ Get in touch with Carina, Jaap and Zuzana! We look forward to reading from you!
OUR CAMPAIGN
#RaiseYourHands4Survivors
Healthcare professionals and politicians have to be confronted with and made aware of the issues survivors are facing. Therefore, CCI Europe and the Austrian Childhood Cancer Organisation decided in October 2018, to develop a campaign solely around survivorship. The survivorship campaign was kicked off at the International Childhood Cancer Day in February 2019 and ran until February 2020.
Concept of the survivorship campaign:
Raise awareness that late-effects might occur, inform about possible late-effects, inform about different projects and initiatives and advocate at different levels to increase the quality of life of survivors.
Stakeholders:
With the survivorship campaign we aim to reach survivors, healthcare professionals and especially policy makers and politicians.
Methods:
The campaign was mainly targeted as a social media campaign (Facebook, Twitter and Instagram). It started off in February 2019, at the International Childhood Cancer Day (15th February). Every week posts about survivorship was uploaded on the CCI Europe and the Austrian Childhood Cancer Organisation´s social media pages to raise awareness about late-effects and long-term follow-up.
The highlight of the campaign was the launch of two survivorship movies in September 2019 which is dedicated as Childhood Cancer Awareness Month.