Current Projects Archives - Youth Cancer Europe (YCE)

PROTECT-EUROPE

Posted on December 11, 2024December 11, 2024 by Florin Barnea

Eliminating the cancers caused by HPV through vaccination

PROTECT-EUROPE is a project co-funded by the European Union under the EU4Health Programme 2021-2027, promoting gender-neutral vaccination among young people in EU member states to prevent HPV-related cancers. The project is developed and delivered by a consortium of over 30 organisations from 16 European Union countries and it is coordinated by the European Cancer Organisation.

Watch the project presentation here: PROTECT-EUROPE Project Presentation and Testimonial

HPV causes approximately 90,000 cancer cases annually in Europe, including cervical cancer as well as anal, penile, oropharyngeal, and other types. The key objective of PROTECT-EUROPE is to help EU member states extend the roll-out of HPV vaccination, supporting the elimination of HPV-related cancers which is a major target of Europe’s Beating Cancer Plan. While all EU member states have introduced or plan to introduce gender-neutral vaccination (GNV) programmes, many still have sub-optimal rates of HPV vaccination uptake. Major barriers include limited access, ineffective communication, low vaccine confidence, and misinformation about vaccination. PROTECT-EUROPE aims to address these issues by engaging health ministries, national agencies, vaccination services, civil society organisations, and clinicians involved in vaccination efforts.

Healthcare professionals (HCPs) play a critical role in guiding young people and their parents/carers through the vaccination process and supporting them in making informed decisions. PROTECT-EUROPE developed 26 recommendations to help improve HCPs’ knowledge and skills. These include being equipped to provide strong, evidence-based recommendations about the benefits of HPV vaccination to patients, using a presumptive approach (ie. assuming that the young person will be vaccinated).

The project’s findings were translated into a series of practical outputs, including training programmes, masterclasses and a range of other tools designed primarily for healthcare professionals and civil society organisations. The online training programme comprises seven modules covering topics such as the HPV-related diseases, HPV vaccine efficacy, HPV vaccine safety, and strategies to promote vaccine confidence. A train-the-trainers programme was also developed, featuring modules that focus on the skills required to become an online tutor who can deliver the programme in local settings.

PROTECT-EUROPE coordinated ten masterclasses on HPV vaccination focusing on public health messaging and strategies to effectively target young people, their parents, and caregivers. Each masterclass includes case studies showcasing successful delivery of HPV immunisation. They explore the most impactful communication technique and creative approaches to reach marginalised communities.

The classes were designed to cater to diverse learning preferences, offering both face-to-face and flexible online learning options. Recordings of the masterclasses and other resources are available on the new PROTECT-EUROPE Hub—an open-access online repository for HCPs, policymakers, and stakeholders. The Hub includes peer-reviewed findings, best practices, training modules, public awareness tools, and links to external resources.

Masterclass 1: Breaking Barriers: Understanding HPV Epidemiology and Reaching Equity Through Gender-Neutral Vaccination. The first masterclass, which was held on the occasion of European Immunisation Week 2024, focused on the topic of epidemiology of HPV infection and why gender-neutral vaccination is key to achieve the elimination of HPV-caused cancers. You can find the recording of the first Masterclass here.
Masterclass 2: Improving Access: What are the Optimal Settings for Delivering HPV Vaccination. The second project masterclass explored the best settings for delivering HPV vaccination, including schools and pharmacies, learning lessons from experience gained in several EU countries. You can find the recording of the second Masterclass here.
Masterclass 3: Achieving Impact: Strategies for Running Effective HPV Vaccination Campaigns. In the third masterclass, speakers shared tips and strategies for running effective vaccination campaigns both online and offline, reaching a broad audience, and supporting informed decision-making. A case study on Denmark’s campaign to rebuild confidence in HPV vaccination was presented. You can find the recording of the third Masterclass here.
Masterclass 4: Exploring a Single-Dose Approach for HPV Vaccination. The fourth PROTECT-EUROPE Masterclass focused on single-dose HPV vaccination and the improved access to immunisation that this approach can bring to the table. You can find the recording of the fourth Masterclass here.
Masterclass 5: All You Need to Know About HPV Vaccine Safety. The fifth masterclass addressed common myths and misconceptions, and presented real-world data on the vaccine’s impact. Participants learned how HPV vaccination contributes to public health and the public messaging that conveys this information most effectively. You can find the recording of the fifth Masterclass here.
Masterclass 6 & 7:Let’s Talk HPV. Sixth and Seventh masterclasses were dedicated to effective communication with parents and young adults on HPV infection and vaccination. Each session approached the topic from distinct, yet equally vital, perspectives. You can find the recording of the sixth and seventh Masterclass here.
Masterclass 8: The Economic Case for HPV Vaccination: Securing Health, Saving Lives. Eighth masterclass was about the overwhelming financial incentives for HPV vaccination. You can find the recording of the eighth Masterclass here.
Masterclass 9: Eliminating HPV Cancers: Key Strategies for a Cancer-Free Generation through Vaccination. After the European Cancer Summit the smartCARE & PROTECT-EUROPE Showcase Event highlighted the main lessons and opportunities from these two flagship EU4Health projects. The recording of this Masterclass will be coming soon. Masterclass 10: No One Left Behind: Reaching Marginalised Communities with HPV Protection. Tenth masterclass explores best practices for effectively reaching and supporting at-risk communities to protect them against the human papillomavirus (HPV) through vaccination. You can find the recording of the tenth Masterclass here.

180 participants attended the largest meeting of the European Network Of Youth Cancer Survivors organised by Youth Cancer Europe

Posted on October 23, 2024October 23, 2024 by Florin Barnea

This August, the largest meeting of the European Network of Youth Cancer Survivors, organised by Youth Cancer Europe in Cluj-Napoca, Romania, brought together 180 participants in attendance (168 in person and 12 online). Beneficiaries, Associated Partners, and youth living with and beyond cancer from a record of 32 countries gathered to celebrate the accomplishments of the ambitious EU-CAYAS-NET project, co-funded by the European Union. The event featured networking events and workshops covering topics such as Adolescent and Young Adult (AYA) cancer care, Mental Health, Quality of Life, Cancer Survivorship, Equity, Diversity & Inclusion (EDI) in cancer care, and more.

The event also coincided with UNTOLD Festival, which our participants were invited to attend as part of the weekend celebrations, and where they got a chance to meet the likes of Sam Smith, Martin Garrix, Dimitri Vegas & Like Mike, Tujamo, Zerb, Alok, Nicky Romero and many more backstage, in meet-and-greets organised by YCE.

UNTOLD, held annually in Cluj-Napoca, Romania, is one of Eastern Europe’s largest music gatherings and holds the #3 spot in DJ Mag’s list of the world’s best festivals. The youth cancer survivors’ meeting at the 2024 UNTOLD Festival was a powerful reminder of the role that major public events can play in supporting and raising awareness on behalf of vulnerable communities.

The project made its presence felt across the city, with welcoming signs at the airport to greet participants, a collaboration with the University of Babes-Bolyai to host everyone attending from out of town at their local campus, and both consuls and staff from the City Hall (including the city’s mayor, who shook hands with representatives of all 32 countries in attendance) coming together to greet our survivors.

In addition to this, Youth Cancer Europe also held an activation corner on the festival site, raising awareness about the project while engaging with tens of thousands of festival attendees throughout the weekend.

National press in Romania, as well as international press, made waves of the initiative, with coverage across 35 online news portals reaching over 23 million users, while a number of the stars posted content from the backstage meet-and-greets on their own social media channels.

FORTEe – Get Strong To Fight Childhood Cancer

Posted on February 23, 2024September 18, 2024 by Katie

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.

YCE conducts 5 hospital Peer Visits in Europe

Posted on November 18, 2023September 18, 2024 by Katie

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-NET” we 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.

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 – A Youth Cancer Europe Advocacy Project

Posted on June 30, 2022November 2, 2022 by Katie

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: