Current Projects Archives - Youth Cancer Europe (YCE)

An exercise intervention for children and adolescents undergoing anti-cancer treatment

What is FORTEe?

FORTEe is an international research project that brings together 16 institutions from eight European countries. It is one of the world’s largest studies in paediatric exercise oncology, receiving funding from the European Union’s Horizon 2020 Research and Innovation Grant. The study aims to investigate the effects of an individualised exercise programme and adapted digital +health technologies in children and young people who are undergoing intensive cancer treatment.

What is the mission of FORTEe?

Maybe you experienced yourself that while going through cancer treatment, a vicious cycle of physical inactivity makes you feel weak and you don’t move around much. Sometimes this happens because of the treatment, the illness itself, or just dealing with all the emotions. In adult cancer patients, it was shown that physical activity and specific exercise training can really help, making them feel less tired, improving their quality of life, and even reducing pain or other complications during treatment.

But what about childhood cancer patients and adolescents?

Until now, precision exercise training has not been part of standard care in paediatric oncology and does therefore not reach most young patients. FORTEe is here to change that!

The big goal of FORTEe is to gather solid evidence that personalized exercise can make a real difference in the care and well-being of children and adolescents with cancer. The FORTEe partners have teamed up to run a special clinical trial focused on childhood cancer patients, aged 4 to 21, who are undergoing anti-cancer treatment.

Why do we do this?

We believe that every young cancer fighter deserves the best care possible. We hope that with the results from our FORTEe clinical trial, we can pave the way for customized exercise training to become a standard part of the care that children, adolescents and young adults (CAYA) with cancer receive all across Europe. This means in the future, more young patients could get access to a specific exercise plan to help them feel better during cancer treatment.

Together we #GetStrongToFightChildhoodCancer!

Are you interested to know more about the FORTEe project and the clinical trial?

Have a look at our website: www.fortee-project.eu/

It is also available in Italian and German!

Follow FORTEe on social media, so you are up-to-date with the latest project news! 

FORTEe on Instagram: https://www.instagram.com/fortee_project/

FORTEe on X/Twitter: https://twitter.com/Fortee_project

FORTEe on LinkedIn: https://www.linkedin.com/company/fortee

FORTEe on Facebook: https://www.facebook.com/FORTEeProject

Here you can find the FORTEe English flyer

The FORTEe project aims to demonstrate that precision-based exercise training during cancer treatment in CAYAs is a safe and potentially effective therapy to counteract fatigue, maintain strength, coordination, and overall improve quality of life. For the exercise training, no specific facility is needed, many exercise routines can be done in the patient’s room! Carefully crafted by the FORTEe consortium, these illustrations are part of training and testing guides, assisting young cancer fighters and their physicians and physiotherapists through exercise routines, specifically tailored for each patient’s journey.  

All rights reserved; reproduction or use of the illustrations requires prior permission from the copyright owner, F. Lanfranconi et al.

2023 Summer was a busy one for our team. Leading the work on Adolescent and Young Adult Cancer (AYA) Care in the EU-cofunded European Network of Youth Cancer Survivors project  EU-CAYAS-NETwe were on the move constantly.

We organised Peer Visits in three awesome European countries – Italy, Belgium, and the Netherlands. We visited a total of 5 hospitals, participated in many educational stakeholder meetings, and worked alongside an incredible team of 30 participants, eager to make a difference.

Now, you might be wondering: What’s all the fuss about? What exactly are these Peer Visits?

Let’s dive into it!

Peer Visits: An In-Depth Look

The concept of Peer Visits is rooted in observational research. It allowed our participants to step into the shoes of local service users (patients) and healthcare professionals, and observe their natural work environment, gaining valuable insights through three types of observations:

Naturalistic Observation: Participants observed the environment where patients receive care and healthcare professionals are working.
Participatory Observation: They conducted interviews, took notes, and captured photographs during the guided tour of the hospitals
Structured Observation: They filled  in a carefully designed Peer Observation Form, focusing on specific aspects of AYA care.

This form of peer learning is designed to stimulate interaction, collaborative learning and solution-building. Our goal is to contribute to a “Specialist AYA Units Minimum Standards” position paper, which will be developed based on peer study reports resulting from Peer Visits to AYA oncology departments in Italy, Belgium and the Netherlands. We were also able to provide the collaborating institutions with valuable feedback, along with practical takeaways that our participants can use to support health-policy initiatives in their own countries.

Gelato, tulips and Belgian waffles

Our journey began in Milan, Italy, where we were warmly welcomed by Dr. Andrea Ferrari and the fantastic team at Fondazione IRCCS Istituto Nazionale dei Tumori. We had a deep dive into the world of AYA care, youth projects, and support programs for young cancer fighters in Italy.

Group of young cancer survivors
Group of young cancer survivors

But the real magic happened when we met some remarkable Italian AYA patients – Giorgia, Adelina, Edoardo, Andrea, Giorgia B, Teresa, and Marta. Their stories touched our hearts, and we had some truly heartwarming and lovely conversations with them.

We also had a chance to catch up with our FORTEe project partners, William Guglielmo Zardo and Marco Chisari, and discuss the exciting plans we have in store for the future.

We later payed a visit to Fedro Peccatori at the Fertility and Procreation unit at the European Institute of Oncology and dropped by the headquarters of Europa Donna – The European Breast Cancer Coalition, where we met with Marzia Zambon, Martina Fontana, Paige Robinson, Giulia Pareschi, and Tanja Spanic.

Our next stop was in Ghent, Belgium. We had a strong start with engaging discussions at the Ghent University Hospital, led by the local AYA host team: Johan De Munter, Nathalie Belpame, Veerle Sey, and Karsten Vanden Wyngaert. We talked about healthcare, insurance, training for medical staff, and learned a lot about how they support young people with cancer. We are so grateful to all the AYA care experts who participated in our focus groups.

We discussed topics like helping minorities and long-term support for young people even after they finish their treatment.We also had stakeholder group meetings with Stichting tegen Kanker & Kom op tegen Kanker NGOs and had the privilege to visit several charitable funded initiatives on the hospital grounds. Another highlight of our trip in Belgium was our visit to Het Majin Huis in Ghent, an open support house, which left us feeling truly inspired.

During our session with Chloe De Roo from the Fertility service we talked about personalised preservation choices for young people. It was eye-opening to discover that professionals undergo specialised training to better assist AYAs.

Plus, no visit to Belgium would be complete without indulging in their famous waffles during the evening!

Our journey concluded in the Netherlands, Amsterdam, where we visited three hospitals in three cities, which are part of the National AYA ‘Young & Cancer’ Care Network: Netherlands Cancer Institute in Amsterdam, the Northwest Hospital Groups in Alkmaar and Radboud University Medical Center in Nijmegen.

Each visit provided invaluable insights into how these institutions operate and cater to the needs of AYA patients. We are incredibly grateful to Prof. Dr. Winnette van der Graaf, Dr. Eveliene Manten-Horst, Dr. Olga Husson, and their amazing team! Our discussions with them were not only super fruitful and insightful but also made our entire experience just amazing! We were thrilled to explore the Activity Centre and the Quality of Life Department. Plus, getting to catch up with our friends from the STRONG-AYA project and having more conversations was a great bonus.

Incredible guided tours led by local AYAs themselves, engaging group discussions, enriching learning moments, and meeting wonderful people – what more could we have hoped for? It was truly an unforgettable experience! Plus, we are proud to say that, by the end of our stay, we fully embraced the Dutch experience navigating public transport and coping with the moody weather !

A summer to remember

We are immensely grateful to all the healthcare professionals, institutions, and individuals who made this adventure possible. Your contributions will undoubtedly shape our ongoing efforts to support young individuals facing the challenges of cancer. We’re excited to bring back the knowledge and experiences gained during these Peer Visits to further our efforts in supporting young individuals battling cancer.

Read more on our General Report on AYA Cancer Care

For more information and updates follow EU-CAYAS-NET on Instagram, Facebook, Twitter, LinkedIn, or visit their official website.

Learn more about the projects we are leading within EU-CAYAS-NET and about our participation in other EU-funded projects here.

Cancer & Fertility preservation advocacy project

With studies suggesting that between 40% and 80% of adult female cancer patients are at risk of becoming infertile and between 30% of male cancer patients may become sterile after treatment for cancer, increased survivorship means that the preservation of fertility is becoming an increasingly important topic for patients [Knapp, Caprice A., Gwendolyn P. Quinn, and Devin Murphy. “Assessing the reproductive concerns of children and adolescents with cancer: challenges and potential solutions.]. It’s also been suggested that fertility impairment might be considered one of the most life-altering late effects of cancer treatment, affecting the survivors’ body image, sexuality, dating relationships, marriage patterns and sense of wellbeing [Levine, Jennifer M., et al. “Fertility and Sexuality.” Paediatric Psycho-Oncology: A Quick Reference on the Psychosocial Dimensions of Cancer Symptom Management (2015).].

However, despite Europe’s ageing population and an increasing consideration for European citizens’ right to build a family, awareness of this issue remains low and discussions linking fertility and cancer are not highly placed on the European Union’s political agenda. Considering the growing momentum in the field of cancer, we wonder why Europe’s Beating Cancer Plan does not reference fertility issues even once.

Following the objectives set out in our White Paper published in 2018, Youth Cancer Europe’s advocacy project focuses on building support & impacting policies through a EU Presidency contact programme, including meetings with the Permanent Representations and specific Members of the European Parliament as well as monitoring on-going legislative files and Council Conclusions/Parliamentary Actions.

After the publishing of the European Commission’s Beating Cancer Plan, we spoke up at the European Parliament’s BECA committee hearing.  As a direct result, the Report on strengthening Europe in the fight against cancer – towards a comprehensive and coordinated strategy (2020/2267(INI)) adopted in February 2022 by the European Parliament, for the first time, addressed topics that were completely ignored by the Beating Cancer Plan, such as fertility. In it, the European Parliament “calls on the Commission and the Member States to plan actions that promote, in the context of care and treatment, greater attention to the protection of patients’ fertility, in particular in the case of paediatric and juvenile cancers” & “strongly urges the Member States to ensure that all cancer patients are fully informed about the possibility of fertility preservation procedures prior to the start of active treatment; calls for the development of guidelines at EU level for health professionals, defining the age at which cancer patients should be informed about the availability of reproductive health procedures; encourages, furthermore, the Member States to make provision for all cancer patients covered by compulsory national health insurance to be reimbursed for such services by national health insurance schemes” 

Youth Cancer Europe is also participating in three distinct thematic Stakeholder Contact Groups facilitated by the European Commission on Europe’s Beating Cancer Plan:

    • “Childhood Cancer” thematic group 
    • “Quality of Life” thematic group 
    • “Reducing inequalities” thematic group

In these contact groups YCE provides input to the Commission on the implementation of the Europe’s Beating Cancer Plan and the Horizon Europe Cancer Mission in areas under the remit of the thematic group. These groups will work in synergy with other already existing Commission stakeholder groups and consultation mechanisms.

Our research activities include evidence and gap mapping to assess currently accessible fertility presentation and fertility treatment options and costs across Europe, as well as an online survey and qualitative study to understand the lived experience of young adults with cancer regarding fertility preservation and fertility assistance and cancer survivors’ attitudes on building a family.

In 2022 YCE launched a Survey on Awareness and Accessibility to Fertility Preservation Procedures in Europe, to better understand young people’s awareness on fertility preservation and its relationship to quality of life and mental health. The respondents were over 600 cancer patients and survivors, aged 15 to 39 at diagnosis, recruited across a wide European region.

The study reveals that about 28 % cancer patients did not discuss medical options for fertility preservation with their healthcare provider, with the Eastern European Countries reporting the lowest rates of involvement in fertility discussions. Furthermore, respondents who were not informed about available fertility services reported the lowest quality of life, fertility-related concerns greatly impacting their level of anxiety and depression.

Based on our findings we can conclude the following:

    • within Europe, there are significant cancer-related fertility inequalities between countries and healthcare systems;
    • accessible fertility preservation programs should become an integral part of cancer rehabilitation for young people and they should be actively included in the development of any novel guidelines;
    • young people’s mental health and quality of life may be compromised by fertility-related distress and should be monitored throughout the cancer continuum.

Read more about the online survey methodology here.

As part of Youth Cancer Europe’s advocacy work, we joined the world’s largest international community of cancer experts at the Union for International Cancer Control (UICC) World Cancer Congress (WCC 2022) in Geneva, where YCE was invited to host a round table. In the session we discussed findings and clinical implications from the results of a pan-European survey of young people and presented novel evidence on FP access and awareness. Using a holistic and cross-sectoral approach, together with a group of experts, the session provided pragmatic, evidence-based, acceptable and scalable solutions to reduce cancer-related fertility inequalities among young people. Round table panellists included Dr. Richard Anderson Professor of Clinical Reproductive Science, University of Edinburgh; Max Williamson medical student at University of Oxford, BSc in Biomedical Sciences at UCL, patient advocate and representative for the NCRI Teenage and Young Adult/ Germ Cell Tumour Research Group; Katie Rizvi founder of Youth Cancer Europe; Dr Anja Borgmann-Staudt professor and medical doctor. The session was chaired by Dr Urška Košir, scientific advisor and advocate with Youth Cancer Europe, lecturer at the University of Oxford.
YCE’s recorded session for the WCC 2022 can be watched in full above.  👆

Next up, in November, YCE’s Urška Košir will represent us at the ECO Summit 2022 in Brussels, speaking on fertility preservation and quality of life among adolescent and young adult cancer patients across Europe.

Fertility impairment prevention, fertility preservation and fertility treatment (including assisted reproduction) continue to be very high on YCE’s agenda and are topics YCE represents in many European and international networks and consortiums, such as ENTYAC and EU-funded projects StrongAYA and EU-CAYAS-NET 


This project would not be possible without the generous support of YCE’s sponsors: