In 2023, under the Quality-of-Life objective, the EU Cancer Mission organised a series of thematic workshops and a conference focused on dialogue with young cancer survivors. The aim was to gain a better understanding of the specific needs and challenges faced by those living with and beyond cancer during and after treatment and to co-create initiatives that will help address these.
Youth Cancer Europe’s ambassadors were invited to participate in the events organised by DG RTD, the European Commission’s Directorate General for Research and Innovation, to take stock of progress and discuss upcoming priorities. This dialogue steers the work of the Cancer Mission, enabling young cancer patients and survivors to co-create initiatives that will help address their specific needs, such as mental health, follow-up care or continuity in education, through research or policy actions.
On 11 and 12 January 2023, an online workshop was organised, bringing together young cancer survivors, patients, parents, and caregivers. A second workshop with the same group of participants took place on 6 February, followed by the ‘Addressing the Needs of Young Cancer Survivors’ conference, which was held on 7 February 2023 in Brussels.
Find the summary reports for each workshop here:
The Young Cancer Survivors Conference was an opportunity for young people living with and beyond cancer from all Member States to interact with representatives and policymakers of EU institutions. In this session, patient advocates, researchers, WHO and EC representatives, stakeholders, and experts debated the implications of inequities and inequalities for young cancer patients and survivors and the substantial differences experienced by young people living in different countries, regions, and belonging to different social groups concerning various aspects during their cancer treatment and follow-up care (e.g. services, information, continuity of education etc), both in terms of access and quality.
HERE you can watch Victor share his personal journey and how cancer has shaped his outlook on life. Through his message he also called on the European Commission to prioritise Equity, Diversity, and Inclusion (EDI) and fertility as critical issues for young people living with and beyond cancer.
The follow-up workshop took place on 26 May 2023 in a hybrid format. Key challenges discussed included mental health and the need for quality psychosocial support, both during and after treatment, when late effects like fatigue, chronic pain, infertility, disabilities, fear of relapse, have a major impact. The transition from childhood to adult care, and from hospital to home care, along with follow-up care, and access to information, were highlighted as areas where inequalities are most felt, both by young cancer survivors and their caregivers.
Read the full report summary HERE.
On December 15, 2023, the Cancer Mission has launched a new dialogue with young cancer survivors, to better understand their specific needs and challenges and to co-create initiatives that will help addressing them.
Read the main points and recommendations from the workshop HERE
Youth Cancer Europe’s Katie Rizvi, Sarunas Narbutas, Carmen Monge-Montero, Erik Sturesson, Stewart O'Callaghan, Ania Buchacz, Victor Girbu, Ana-Maria Totovina presented our work and advocated for our research priorities at the DG RTD workshop. They emphasised the need for a concentrated focus on Adolescents and Young Adults (AYAs) with cancer, highlighting the importance of Equity, Diversity and Inclusion (EDI), and addressing quality-of-life issues such as fertility counselling and treatment options for fertility preservation and reproductive planning before, during, and after cancer treatment.
Another aspect that was addressed was that young cancer patients and survivors are voicing strong interest but have limited opportunities for their direct involvement in the design and implementation of research studies (e.g. clinical trials). Examples of successful research projects and initiatives addressing survivorship, innovative treatment approaches, and patient's involvement in the research were showcased.
The overarching goal of the EU Mission on Cancer is to improve the lives of more than 3 million people by 2030 through prevention, optimization of diagnosis and treatment, increased knowledge about cancer, and ensuring equitable access to the above all across Europe. To achieve its ambitious goals, the EU Mission on Cancer is working hand in hand with Europe's Beating Cancer Plan.
These engagements have created the basis for the establishment of a new dialogue between young cancer patients, survivors and the European Commission, through the Cancer Mission.
Watch the EU Mission on Cancer Video - Addressing the needs of Young Cancer Survivors HERE.
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