- Organization name: Childhood Cancer International – Europe (CCI Europe)
- Country and intervention zone: Europe
- Creation date: In 2015 the CCI Europe Regional Committee was offi cially launched as continental Committee of CCI, based on the 2011 installed Patient Advisory Committee (PAC) in the EU project ENCCA. In 2020 CCI Europe was offi cially registered as legal branch of CCI.
- Status: European NGO
- Number of employees and volunteers: 3 employees / around 30 volunteers.
- Annual budget (or turnover) and main financing: €150 000 through EU fundings, grants, sponsorships and donations.
CCI EUROPE AND VISION IN THE FIGHT AGAINST CHILDHOOD CANCER
- All paediatric cancers are rare or ultra rare with age-related, biological, clinical and organisational specificities that require them to be addressed through further specific approaches, strategies and measures beyond simple envision of adult services. Paediatric cancers represent a leading burden in Europe with substantial inequalities in access to the best available care and expertise, causing up to 20% differences in children’s survival rates among European countries.
- Childhood Cancer International – Europe (CCI Europe or CCI-E) is the European branch of Childhood Cancer International (CCI). CCI Europe is the biggest pan-European childhood cancer parents’ and survivors’ organisation. It represents childhood cancer parents’ and survivors’ groups and other childhood cancer organisations. CCI Europe reunites 67 member organisations across 34 countries in Europe to:
➔ share knowledge and experiences
➔ offer education and disseminate information
➔ advocate for the rights and needs of childhood cancer patients and survivors;
➔ raise awareness about childhood cancer
➔ actively engage and partner in research and development
➔ provide assistance and guidance to establish local/national organisations and groups
- The vision of CCI Europe is to cure children and young people with cancer with no- or as few as possible long-term health problems and late-effects, and to reach it – CCI Europe has built a broad network of patients, parents-and survivors in the company of trusted and well-founded partnership with healthcare professionals and researchers and other patient and survivor- organisations at the European level (e.g. SIOPE, PanCare). Our cross-border European ‘patient voice’ proactively contributes to numerous European projects on childhood cancer (e.g. ENCCA, ExPO-r-Net, JARC and PanCareFollowUp) ensuring that urgent needs of children and young people with cancer are not overlooked.
CCI EUROPE CONTRIBUTES TO THE FIGHT AGAINST CHILDHOOD CANCER BY
- Advocating for better policies for patients, parents and survivors and raising awareness of the unique needs in the childhood cancer sector, which are different from the adult cancer context and can be appropriately conveyed by paediatric cancer patient advocates and survivor groups.
- Calling for a clear and specific EU funding stream dedicated to paediatric cancer research, and budget allocations across all relevant EU programmes.
- Addressing societal equity needs that arise for childhood, adolescent and young adult cancer survivors and fostering awareness of the importance of parental involvement and financial security for families caring for children and adolescents with cancer.
- Pleading for the set up of a comprehensive educational programme for patient advocates accessible to all Member States across Europe to contribute to policy-making initiatives and efficiently engage in multistakeholder policy dialogue.
- Ensuring the patient community in this disease area is systematically consulted and meaningfully involved in the development of cancer control programmes or equivalent cancer or health policy instruments throughout, from development to implementation, monitoring, and evaluation.
Our areas of intervention
CCI EUROPE MAIN AREAS OF INTERVENTION
- CCI Europe was instrumental in developing the SIOP Europe Strategic Plan – A European Cancer Plan for Children and Adolescents. Based on this framework, CCI Europe made collaborative steps to pursue the mission of achieving ‘zero deaths’ and ‘zero late effects’ from childhood, adolescent and young adult cancer in Europe, with clear milestones to mark progress over time – and have created the first CCI Europe Strategic Pillars structure.
- The CCI Europe Strategic Pillars were set up in order to shape the strategic plan and build the basis for a roadmap on CCI Europe’s present and future work. Pillars present main areas of intervention of the membership by uniting parents, patients and survivors and advocating for their rights to accelerate access to research and innovation and improve the medical and psychosocial care for children and young people with cancer all over Europe, eliminate still existing inequalities, improve the quality of survivorship and increase number of highly specialised patient advocates.
CCI EUROPE KEY ACHIEVEMENTS
- Together with healthcare professionals and researchers, CCI Europe actively contributes in shaping the childhood cancer agenda at the EU level – which resulted in having specific EU initiatives and reports pertinent to childhood cancer, such as Europe’s Beating Cancer Plan and 2020 lighting up in gold of the European Parliament for the Childhood Cancer Awareness Month (September).
- Established the CCI Europe Annual Conference that provides an excellent opportunity for parents and childhood cancer survivors in Europe to gain information and have impact in the field of research and development, discuss with healthcare experts about various topics and participate in many multi-stakeholder sessions.
- Actively participated in SIOPE led annual oncopolicy events on childhood cancer needs organised in partnership with MEPs.
- Contributed with content and fed into specific policy asks for paediatric cancers to the Rare Cancer Agenda 2030: 10 Recommendations from the EU Joint Action on Rare Cancers (September, 2019).
- Developed a roadmap for parents’ and survivors’ groups and kept proactively contributing to current activities of the European Reference Network on Paediatric Cancer (ERN PaedCan).
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