Action grants for the EU Network of Youth Cancer Survivors

Topic description

Objective:

Background and policy context
In 2020, over 15 500 children and adolescents were diagnosed with cancer, with over 2 000 young patients losing their lives to it. In fact, cancer is the principal cause of death by disease in children beyond the age of one. Up to 30% of children affected by cancer suffer severe long-term consequences. The number of childhood cancer survivors continues to grow and comprehensive care, treatment and follow-up are essential to help young patients make a good recovery and enjoy an optimal quality of life. There is a need for multidisciplinary and proactive approaches to healthy cancer survivorship, as well as for improved social networking and establishment of communication and information sharing platforms tailored specifically to young adult cancer survivors, which are well demonstrated instruments to improve the quality of life of children and young adult cancer survivors.

This action supports the implementation of the Europe’s Beating Cancer Plan objective to put childhood cancer under the spotlight and implements the EU4health Programme’s general objective of improving and fostering in the Union (Article 3, point(a)) through the specific objectives in Article 4, points (a),(g) and (j) of Regulation (EU)2021/522.

Objectives pursued
The action will improve the quality of life of children and young adult cancer survivors through improved social networking and the use of a platform to improve the links amongst individuals, patients, cancer survivors, and social and health professionals active in cancer prevention and care across the Union.

Building on the experiences gained by several organisations, non-governmental organisations and cancer care institutions active in childhood, adolescent, and young adult cancers, the action has the ambition of establishing the new ‘EU Network of Youth Cancer Survivors’ through federating the mentioned bodies to create a Union-wide platform to support the promotion of targeted actions and initiatives, covering the main areas which are of demonstrated benefit to improve the quality of life of young cancer survivors. The activities will be designed taking into account those key factors that may influence childhood cancer survivors’ participation in social networking and programmes tailored to their needs, such as the resources accessed by individuals through a broad range of social connections (‘social capitals of individuals’), social support, family interaction, self-efficacy and self-reported quality of life.

Children, adolescents and young adult survivors will be at the core of the actions and will be the main actors in linking with their countries and/or organisation. A conference will give the possibility to show and share the results of the activities implemented and on-going across the Union, and to discuss as widely as possible the needs and challenges. The EU Network will also be open to establish international links through direct contacts with partners outside the Union or through links with international organisations. Particular attention will be given to actions limiting the disruptive impact of cancer on the education of children and young people affected by cancer. This will happen with the involvement of patients and of formal and informal carers, on a voluntary basis.

Description of the activities to be funded under this topic
The activities funded will be as follow:
- Preparatory activities (first 6 months of the initiative). Through meetings and parallel consultations to define / agree on structure, modus operandi, secretariat, annual programme, and other operational and organisational needs, including a costing exercise of the EU Network.
- Launch of the EU Network (February 2022) – To be organised in the European Parliament and comparable to the launch of the Europe’s Beating Cancer Plan in February 2021.
- Starting the activities of the Network through ad hoc missions/webinars/workshop, with the direct involvement of EU Network delegates and ‘Ambassadors’.
- First general assembly of the Network Q3 2022.
- Throughout the project, wide visibility of the actions/initiatives of the EU Network will be requested.

Expected results and impact
The action is expected to result in an expansion of the current support to improve the quality of life of young cancer survivors through networking, targeted actions, linking with existing organisations at Union and international level, and through highly visible periodical events to show the impact of the work done, and the future challenges.

The action will improve communication between children and adolescent cancer survivors, formal and informal carers, and civil society, and will strengthen the knowledge on how to better recognise the risk of getting cancer, and how to make a difference in the lives of young people with cancer and survivors, and allow them to learn how to become an advocate to bring key messages and knowledge on cancer survivorship to civil society.

Specific action-level indicators for reporting purposes
The applicants will include the following specific action-level indicators and related reporting activities in their proposals:
- number of events, meetings and discussions organised;
- number of documents produced for information and dissemination;
- number of initiatives supported;
- number of participants (people or entities);
- number of participants (Member State, other countries or international organisations);
- number of stakeholders/association participating per country and field.
The applicants are required to include in their proposals additional specific action-level indicators which will be agreed with the HaDEA during the grant agreement preparation.