cancer Archives - Youth Cancer Europe (YCE)

Equity, Diversity and Inclusion (EDI) in Cancer Care

Posted on December 30, 2024January 31, 2025 by Florin Barnea

a Youth Cancer Europe Advocacy Project

Recognising that social determinants (such as age, socioeconomic status, ethnicity, sexual orientation, gender identity, or for example cultural backgrounds) can significantly contribute to disparities in healthcare access and treatment benefit for young people across Europe, Youth Cancer Europe has focused its efforts on addressing equity, diversity, and inclusion (EDI) in cancer care through a series of strategic actions between 2023 and 2024.

This report details the outcomes of YCE’s EDI-focused work, including high-level policy engagement, stakeholder consultations, and widespread dissemination efforts. These activities not only amplified the voices of underrepresented communities but also contributed to shaping EU and national policies to drive forward more equitable healthcare practices.

Engagement with EU Decisionmakers

In 2023, Youth Cancer Europe (YCE) participated in the EU Cancer Mission’s Quality-of-Life consultation series, engaging 70 young people with lived cancer experience to gather insights on unmet needs. On 15 December 2023, YCE contributed to a joint meeting with DG RTD and DG SANTE. The Consultation Report acknowledged YCE’s input, stating: “Information available on the Cancer Mission implementation and its interplay with Europe’s Beating Cancer Plan is rather scattered; emphasis was placed on minority groups and disadvantaged people, as particularly hard to reach.”

YCE’s contributions were reflected in the final recommendations (EU Cancer Mission Consultation Report (December 2023), which called for “enhanced outreach to local communities” and “further research to better understand the needs of minority and disadvantaged populations.”

Health Equity Under the Microscope: Webinars and Awareness Events on Social Determinants of Cancer Outcomes

Between March and September 2023, several events took place addressing equity, diversity, and inclusion (EDI) in cancer care, each focusing on distinct social determinants impacting health outcomes. We also spoke at 2 congresses, focusing on the core objective of spotlighting inequalities and offering actionable solutions.

Equity, Diversity and Inclusion in Cancer Care Webinar – 30 April 2023

The webinar amplified the voices of young cancer patients, addressing how age, gender, race, and socioeconomic status impact access to care. Patient advocates from 15 countries shared experiences, highlighting discrimination and barriers in healthcare. Johan de Munter (University Hospital Ghent) and Diana Todea (Little People Romania) provided practical insights on embedding EDI in clinical settings. Katie Rizvi, Urška Košir, and Carmen Monge-Montero presented policy recommendations calling for mandatory EDI training in healthcare institutions and inclusive patient communication. Over 100 participants contributed to the dialogue, driving forward actionable strategies for more equitable cancer care across Europe.

Upscaling Adolescent and Young Adult Cancer Care Webinar – 20 June 2023

This virtual roundtable brought together leading experts, patient advocates, and policymakers to address the inequities in cancer care for adolescents and young adults (AYA) across Europe, focusing on the need to establish minimum standards of care. Chaired by Dr. Daniel Stark (University of Leeds/SIOPE) and Katie Rizvi (Youth Cancer Europe), the discussion centred on the structural, financial, and policy barriers that prevent equitable access to AYA-specific services.

Speakers, including Tim Van Hoorenbeke (Kom op tegen Kanker), Johan De Munter (University Hospital Ghent), Dr. Ulrike Leiss (Medical University of Vienna), and Jan-Willem Van-de-Loo (DG Research and Innovation), highlighted disparities in care availability, inconsistent funding, and the lack of inclusive healthcare environments. The event reinforced the need for sustainable policies, cross-border collaboration, and greater recognition of AYA needs to ensure equitable cancer outcomes for all young people, regardless of location or background.

Mental Health and Self-Acceptance in Cancer Care online event – 8 September 2024

The webinar held on Discord explored the vital role of mental well-being and self-acceptance in empowering young people with cancer to navigate healthcare and make informed decisions. Recognising that emotional resilience influences access to services, the session addressed how self-worth helps individuals advocate for their needs, set boundaries, and prioritise well-being.

Participants reflected on what self-acceptance means during and after cancer, with discussions on embracing strengths and vulnerabilities to improve confidence in healthcare settings. Practical strategies for building and sustaining self-acceptance were shared, alongside insights into how peer support fosters emotional healing and helps reduce disparities in mental health care.

By promoting self-care as a core element of equitable cancer care, the event highlighted the connection between mental health, healthcare navigation, and ensuring young people receive the support they deserve.

Two Wars, One Person – Nataly Hrad on refugee and migrant population’s access to cancer care

Youth Cancer Europe’s patient advocate Nataly Hrad shared her lived experience as a Ukrainian cancer patient during the war, addressing barriers faced by refugee and migrant populations in accessing cancer care across Europe. Her talk on ESMO Congress 2024 highlighted the need for cultural sensitivity and transnational support mechanisms.

LGBTIQ+ Advocacy and Cancer Care Webinar – 24 April 2024

The Discord webinar highlighted the unique challenges faced by LGBTIQ+ individuals in cancer care, focusing on screening inequalities, discrimination, and the need for inclusive, patient-centred care.

Stewart O’Callaghan (they/them), Founder and CEO of OUTpatients, shared their journey with Chronic Myeloid Leukaemia and the inspiration behind creating the UK’s leading LGBTIQ+ cancer charity. They addressed disparities in cancer risks for trans individuals and the importance of educating healthcare professionals on trans-inclusive care.

Levi K. (they/them), a trans patient advocate, reflected on navigating cancer and identity, underscoring the need for representation and equity in healthcare. The session amplified voices within the LGBTIQ+ community, advocating for systemic change and greater inclusivity in cancer care services.

Addressing Health Equity and Rare Cancers – EONS17 / ESMO2024

YCE’s two talks focused on the intersection of health equity, socio-economic barriers, and rare cancers, bringing patient perspectives to the forefront of policy discussions.

In “Advancing Health Equity in Cancer Care,” Katie Rizvi highlighted how financial instability and limited resources negatively impact cancer outcomes, calling for targeted interventions to improve access for underserved communities. Existing policies and initiatives aimed at reducing disparities were reviewed, with a focus on driving systemic change.

In “Addressing the Unmet Needs in Rare Cancers,” K. Rizvi (YCE) engaged in an on-stage dialogue with Prof. Jeliazko Arabadjiev, Board Member of the EU Mission on Cancer.. The discussion addressed the mental health toll, financial strain, and lack of access to clinical trials faced by rare cancer patients. The session highlighted the need for policy reforms to tackle inequities in diagnosis, treatment, and survivorship. Both sessions underscored the importance of inclusive strategies to ensure equitable cancer care across Europe.

Throughout these events, YCE promoted greater visibility for underrepresented groups, advocated for enhanced health literacy, and addressed systemic inequalities in cancer care. These, and upcoming engagements will continue to inform EU-level discussions and policy developments.

Patient Voices Highlighting Inequalities in Cancer Care

In the following videos Carmen, April, Bradley, Erik, Karl and Ruth highlight personal stories from patients and advocates across Europe, showcasing the barriers faced by migrants, LGBTQ+ individuals, and neurodivergent patients in cancer care.

Belonging Beyond Borders: Facing Cancer as a Migrant

Carmen (Costa-Rica) and April (Philippines) highlight the challenges faced by migrants in the Netherlands in accessing cancer care, addressing discrimination, cultural barriers, and lack of inclusive support systems. Their story underscores the need for healthcare systems to recognise diverse patient experiences and provide equitable, accessible care for all.

Fighting for Life and Rights: Facing Homophobia in Cancer Care

Bradley (UK) shares his experience of facing homophobia during cancer treatment and highlights systemic barriers for LGBTQ+ patients in healthcare. His story underscores the urgent need for inclusive care, improved training for healthcare professionals, and stronger advocacy to address discrimination and ensure equitable cancer care for all patients.

The Lasting Cycle Between Cancer and Socioeconomic Status

Erik (Sweden) highlights how cancer in adolescence limits career growth, creating long-term financial hardship. This lack of socioeconomic mobility affects quality of life and restricts access to healthcare later in life. His experience underscores the need for policies that address financial inequities faced by those impacted by cancer.

Navigating Cancer Care as a Neurodivergent Patient

Erik shares how neurodiversity affects his interactions with healthcare professionals, often leaving him feeling dismissed and excluded. His experience highlights the need for calmer, more supportive environments and better communication for neurodivergent patients. YCE’s Recommendations for Equitable, Diverse, and Inclusive Cancer Care in Europe call for greater investment in psychosocial care, improved research on invisible disabilities, and inclusive policies that ensure cancer care meets the needs of all patients—regardless of neurological or cognitive differences.

Creating Safe Cancer Care for LGBTQ+ Patients

Bradley opens up about facing homophobia during his cancer treatment and his commitment to ensuring no young person experiences discrimination in healthcare.

Addressing Barriers to Cancer Care for Migrants and Refugees

Dr. Karl Smith-Byrne (Senior Molecular Epidemiologist, Oxford University) and Esraa Abdallah (Global Inclusion Officer, PATRIR Institute) discuss the importance of addressing why patients—especially migrants and refugees—feel unheard or disadvantaged in healthcare. Their insights highlight the need to improve access and inclusivity, ensuring better survival rates and well-being for all patients, regardless of background or migration status.

Why Inclusive Cancer Care Must Consider LGBTQ+ Patients’ Needs

Ruth (Romania) highlights the importance of recognising the unique needs of LGBTQ+ patients in healthcare. They emphasise the need for medical professionals to provide inclusive, informed care that acknowledges diverse identities, ensuring equitable and compassionate treatment for all patients.

Inclusive Health Access Dialogues and National-Level Engagement

In alignment with our commitment to fostering equitable healthcare across Europe, Youth Cancer Europe successfully organised and participated in a series of high-impact EDI events and policy dialogues throughout 2023 and 2024. These initiatives focused on amplifying the voices of underrepresented communities, strengthening collaboration across sectors, and influencing national and EU-level healthcare policies.

From Prejudice to Progress – Round Table and Workshops (Cluj-Napoca, 5-8 November 2023)

The round table, held on 6 November 2023 with 35 participants at the Radisson Blu in Cluj-Napoca, Romania, brought together distinguished leaders and experts to address pressing issues surrounding discrimination, equity, diversity, and inclusion (EDI) in healthcare and society. Organised by Youth Cancer Europe, the event opened with remarks by Emil Boc, Mayor of Cluj-Napoca, Prof. Razvan M. Chereches, MD PhD and Public Health Professor at Babes-Bolyai University, and Shajjad Rizvi MBE, Honorary British Consular Agent for Cluj-Napoca.

The first panel, “Breaking Down Barriers and Building Bridges,” moderated by Katie Rizvi, featured Dr. Laszlo Istvan-Peter, Medical Director of the “Prof. Dr. Ion Chiricuță” Oncology Institute in Cluj-Napoca, Dr. Delia Nicoară, Public Health Specialist, “Prof. Dr. Ion Chiricuță” Oncology Institute, Cluj- Napoca, Romania, Esraa Abdallah, Project Officer, Global Inclusion Department, Romanian Peace Institute (PATRIR), and Ruth Borgfjord, Founder of Queer Sisterhood Cluj. Discussions focused on fostering inclusion for underrepresented communities, highlighting cross-sector collaboration as essential for dismantling systemic barriers.

The second panel, “From Awareness to Action: Access to Health & Wellbeing,” delved into healthcare disparities and the urgent need for equitable access. Panellists included Dr. Nicoleta Antone, Medical Oncologist at the “Prof. Dr. Ion Chiricuță” Oncology Institute, Victor Gîrbu, Chief Performance Officer at Moldova’s Ministry of Labour and Social Protection and YCE Patient Advocate, Carmen Monge-Montero, YCE Researcher and Patient Advocate from the Netherlands, Stewart O’Callaghan, Founder and CEO of OUTpatients UK, and Dr. Emily Pattinson, Senior Diversity and Inclusion Consultant at Inclusive Employers UK.

The subsequent EDI Workshop from 6 to 8 November gathered healthcare professionals, researchers, and advocates to address inclusion and cultural awareness in European healthcare. Discussions focused on identifying marginalised groups, understanding legal protections, and addressing societal and historical factors influencing discrimination. Participants explored overlooked inclusion topics in healthcare and highlighted issues raised by younger generations that often go unrecognised by older ones.

The workshop examined how cultural and national contexts shape behaviours, relationships, and team dynamics across different sectors. Specific challenges faced by clinicians, researchers, and patient advocates were analysed, with a focus on adapting inclusion efforts to meet the unique needs of each group. Attendees also discussed the role of inclusive language and the impact of using English as a primary medium, recognising the importance of addressing bias, privilege, and intersectionality in diverse healthcare settings.

European Parliament Policy Dialogue – Brussels (21 March 2024)

At the heart of YCE’s advocacy efforts, the policy dialogue at the European Parliament convened leading MEPs, patient advocates, and healthcare providers to present and discuss recommendations for equitable cancer care across the EU. Hosted by MEP Stelios Kympouropoulos a prominent member of the Committee on Employment and Social Affairs and the Disability Intergroup, and featuring MEP Tomislav Sokol, the high-level policy event convened policymakers, healthcare professionals, researchers, and patient advocates to present and discuss tangible actions to reduce healthcare disparities in cancer care.

Opening the session, MEP Kympouropoulos highlighted the critical importance of addressing inequalities in cancer care and fostering cross-border cooperation. Katie Rizvi, Co-founder and Executive Director of YCE, set the stage by presenting the rationale behind YCE’s policy recommendations, grounded in evidence from patient experiences and literature reviews. Carmen Monge Montero, a nutrition scientist and YCE researcher, shared insights from the comprehensive literature review, while Urska Kosir, research scientist and patient advocate, detailed key findings from surveys of patients and healthcare providers, amplifying the patient voice at the heart of the initiative.

Stewart O’Callaghan, Founder and CEO of OUTpatients, introduced the full policy document, emphasizing actionable recommendations to drive equitable cancer care. The event also featured MEP Tomislav Sokol, Rapporteur on reducing healthcare disparities, who provided the policymaker’s perspective on fostering cohesion and improving cross-border health collaboration.

Johan de Munter, Nurse Manager at Ghent University Hospital and former President of the European Oncology Nursing Society (EONS), brought the healthcare provider’s view, stressing the importance of integrating inclusive care practices. Victor Girbu, YCE Project Manager and patient advocate, outlined next steps, bridging policy with practical implementation at national and EU levels.

The event concluded with a moderated Q&A, fostering dynamic exchanges between audience members and speakers, reinforcing the role of patient advocacy in shaping EU health policies. The event represented a milestone in advancing the goals of Europe’s Beating Cancer Plan, ensuring equitable access to cancer care for all, particularly marginalised and minority communities.

National-Level Policy Engagement – Lithuanian Parliament (26 May 2024)

In collaboration with Monika Ošmianskienė, Chair of the Commission for People with Disabilities in Lithuania, YCE participated in a national policy event at the Lithuanian Parliament to address health equity and EDI in cancer care. The dialogue focused on aligning Lithuania’s healthcare policies with EU standards, also addressing the specific needs of disabled populations and minority groups as part of the broader European health equity agenda.

EDI in Cancer Care Training – Cluj-Napoca (3-12 June 2024)

The EDI in Cancer Care Training, co-organised by YCE and Inclusive Employers Ltd., welcomed 59 participants from 25 countries, representing 51 organisations across healthcare, academia, and patient advocacy. The programme, tailored for researchers (3-6 June), healthcare providers (6-9 June), and patient advocates (9-12 June), addressed inclusive communication, cultural competence, health inequalities, and advocacy. Sessions engaged participants in privilege and bias activities, discrimination response techniques, and strategies to foster inclusive environments. With 27% participants from vulnerable or minority backgrounds, this event reinforced YCE’s commitment to building capacity across diverse healthcare sectors.

EDI training at the European Network of Youth Cancer Survivors event – (7 – 12 August 2024)

On August 8, 2024, Youth Cancer Europe, in collaboration with Asociația Little People Romania, hosted the EU-CAYAS-NET closing event in Cluj-Napoca, Romania. Participants and partners from 32 countries attended networking events and workshops focusing on AYA cancer care, mental health, quality of life, survivorship, and Equity, Diversity & Inclusion (EDI) in cancer care.

Inclusivity Training – for Romanian young adults living beyond cancer (Timisoara, 13-14 December 2024)

On December 14th, 2024, YCE hosted an inclusivity training in Timisoara, Romania, bringing together 100 young people living with and beyond cancer in Romania. This initiative, supported by Little People Romania, marked the first local-language training of its kind, reflecting Romania’s diverse survivor community, including members from Roma and other ethnic minorities.

Key discussions centred on fostering a more inclusive and supportive environment within the Temerarii community by addressing cultural biases, social stigma, and the unique challenges faced by minority and marginalised members. Participants explored ways to build trust, challenge stereotypes, and ensure that all voices are heard and valued. The group reflected on how personal identity, cultural background, and lived experiences shape interactions and relationships within the community.

Interactive sessions focused on creating safe spaces, reducing judgment, and encouraging open dialogue to allow members to express themselves authentically. As a result, the community committed to establishing an EDI committee for 2025 to drive forward practical initiatives that enhance accessibility, representation, and inclusion. This committee will lead efforts to strengthen peer support, develop tailored outreach for minority groups, and implement measures that promote belonging for every member of the Temerarii community.

By engaging over 500 participants from 30 countries in a series of local and EU-level direct dialogues in 2024, YCE has driven forward inclusive cancer care initiatives, ensuring that marginalised voices inform healthcare reforms and that best practices in EDI are embedded across the European healthcare landscape.

Recommendations for Equitable and Inclusive Cancer Care in Europe

Building on the extensive research, consultations, peer visits, and stakeholder engagements conducted throughout 2023-2024, Youth Cancer Europe has developed a comprehensive set of recommendations to drive forward equitable, diverse, and inclusive (EDI) cancer care across Europe. This section summarises the core outcomes of the initiative, reflecting insights gained through webinars, round tables, literature reviews, and surveys, as well as direct feedback from healthcare professionals, patient advocates, and marginalised communities.

Methodology

The development of this white paper was grounded in a multi-faceted and participatory approach to ensure diverse perspectives and comprehensive data collection. Key components of the methodology included:

1. Literature Review

A scoping and grey literature review assessed 1,519 articles, narrowing the selection to 914 based on inclusion criteria related to age, category, and region. Applying a Europe-specific filter further reduced the pool to 90 articles for detailed analysis, revealing that 31% focused on childhood cancer and 11% on adolescent and young adult (AYA) cancer care. The review highlighted significant knowledge gaps, as topics concerning gender, sexuality, family, education, and career were less represented in European literature compared to global research. In total, 27 sources of grey literature were analysed, drawn primarily from official webpages (48%) and reports (28%), with the majority addressing issues related to race, ethnicity, gender, and sexuality.

2. Online Surveys

Two cross-sectional surveys were conducted to gather insights from both patients and healthcare professionals (HCPs). The patient survey, distributed in 12 European languages, engaged 128 participants from 25 countries, with an average age of 30.9. It collected both quantitative and qualitative data, revealing barriers related to marginalisation, difficulties navigating healthcare systems, and unmet needs. The healthcare provider survey, completed by 77 respondents across 22 EU countries with an average age of 51, targeted cancer-specific professionals such as oncologists, nurses, and researchers. Notably, 97% of HCP participants recognised the importance of equity, diversity, and inclusion (EDI) in cancer care but identified significant gaps in education and practical implementation.

3. Peer Visits to Leading Cancer Centres

Youth Cancer Europe facilitated peer visits to five leading adolescent and young adult (AYA) cancer centres in Italy, Belgium, and Netherlands (Istituto Nazionale dei Tumori, Italy; Ghent University Hospital, Belgium, The Netherlands Cancer Institute in Amsterdam, The Northwest Hospital Groups in Alkmaar and Radboudumc in Nijmegen, Netherlands). Thirty young advocates from 16 countries participated, conducting structured observations, semi-structured interviews, and surveys to gather insights from patients and hospital staff. These visits identified best practices in holistic care, psychosocial support, educational and vocational assistance, and palliative care. The findings highlighted the need to expand services, with a particular focus on addressing the needs of minority groups, neurodivergent patients, and individuals from lower socio-economic backgrounds.

4. Multi-Stakeholder Consultation and Workshop

The “From Prejudice to Progress” round table and workshop brought together 37 stakeholders from 17 countries in Cluj-Napoca, Romania. Participants included patient advocates, healthcare professionals, policymakers, researchers, and community leaders. The event facilitated cross-sector collaboration, focusing on strategies to integrate equity, diversity, and inclusion (EDI) principles into cancer care pathways. Key discussions emphasised the importance of inclusive language, case-based learning, and increasing the representation of lived experiences in policy development and service design.

Four Focus Areas

Based on our findings, we focused on four important areas to ensure fairness and inclusivity in cancer care:

1. Race, ethnicity, culture, refugee, or migrant status

To address disparities and ensure equitable access to cancer care for individuals from diverse racial, ethnic, and cultural backgrounds, including refugees and migrants.

3. Age, physical and mental development, and wellbeing

To recognise the unique needs of individuals at different stages of life, including children, adolescents, and young adults, and acknowledge mental health status and neurodiversity as important determinants of health outcomes.

2. Gender identity and sexual orientation

To promote awareness and support for LGBTIQ+ individuals affected by cancer, ensuring they receive respectful and inclusive care regardless of their gender identity or sexual orientation.

4. Education, career, and socioeconomic status

To address social determinants of health and ensure that individuals from all socioeconomic backgrounds have access to quality cancer care, regardless of their education level, career status, or living conditions.

Recommendations

Strengthening EDI in Research: Improving Patient Data Collection and Enhancing Research Team Diversity

EU Member States should systematically, and within legal bounds, improve the data they hold for ethnicity, LGBTIQ+ identity, psychosocial development, quality of life, physical and mental health, education, socioeconomic status, and employment rights of cancer patients.
The EU should work towards a standardised data collection framework, shared via the EU Health Policy Platform alongside other major EU initiatives.
Equal emphasis should be placed on increasing diversity and inclusion within healthcare and research personnel, fostering representation across all levels of research and clinical care.

Improving EDI in Cancer Services: Providing Culturally Sensitive Care and Promoting Diverse Representation in Care Teams

Cancer services should develop, improve, and implement culturally sensitive care, ensuring patients receive support that respects their cultural, psychosocial, financial, educational, reproductive, and sexual needs.
Efforts must focus on promoting diverse representation in care teams to reflect the communities they serve.
Patients with lived experience should be actively engaged in developing health strategies, funding decisions, service creation, and co-authoring policies, ensuring collaborative processes that prioritise patient perspectives and needs.

Fostering Diversity and Inclusion within Patient Organisations

Patient organisations should proactively recruit individuals from diverse backgrounds to ensure inclusive representation at all levels.
Training on cultural competency, unconscious bias, and inclusive practices should be embedded across patient advocacy groups.
Organisations must implement policies and frameworks that promote inclusivity, equity, and accessibility within their operations and outreach activities.

Recommendations for the European Commission

The position paper urges the European Commission to prioritise the integration of EDI principles across all EU health initiatives. This requires dedicated funding and resources for research, programmes, and interventions targeting disparities in cancer prevention, diagnosis, treatment, and survivorship among marginalised and underserved populations.

Additionally, the Commission is encouraged to:

Expand the scope of social determinants included in the Inequalities Register, addressing factors beyond the currently captured data.
Develop and implement EDI-focused policies, guidelines, and best practices across all member states to ensure equitable access to quality cancer care, irrespective of socio-economic status, ethnicity, gender identity, sexual orientation, or age.

Dissemination and Communication

Throughout 2024, YCE presented findings from its EDI initiatives at several international forums, including the Lithuanian Parliament policy event in May, the AYA Cancer Conference in Ljubljana in June, and the WECAN Academy EDI training in July. In August, YCE led an EDI workshop and introduced the white paper to the EUCAYASNET consortium in Cluj-Napoca. Dissemination efforts continued into the autumn, with presentations at EONS 17 and the ESMO Congress in Madrid in September. YCE also shared recommendations at the Inspire2Live Annual Congress in Amsterdam in November and engaged with global stakeholders at Ethics and Equity – the 6th Global Adolescent and Young Adult Cancer Congress in Melbourne in December.

These engagements formed part of a broader communication strategy aimed at maintaining a continuous dialogue with clinicians, researchers, patient advocates, and policymakers. YCE leveraged these opportunities not only to share best practices and policy recommendations but also to highlight the systemic barriers faced by underrepresented groups in accessing cancer care. By ensuring consistent messaging across multiple platforms, YCE continues to reinforce the importance of embedding EDI principles in all aspects of cancer policy, research, and healthcare delivery.

What else is planned?

In 2025, Youth Cancer Europe will continue advancing EDI in cancer care through thematic online meetings and speaking opportunities, addressing social determinants of cancer outcomes, featuring renowned speakers and EDI advocates, including Yasmin Ismail – Cultural Researcher (Zambian/UK, Netherlands), addressing cultural sensitivity in healthcare environments and Asako Osedo – Inclusive Design Researcher (Japan/Netherlands), focused on integrating neurodiversity and accessibility into cancer care, Françoise Meunier – Founder of the European Initiative on Ending Discrimination (Belgium), focusing on the rights of cancer survivors and tackling employment discrimination; Stewart O’Callaghan – Founder of OutPatients (UK), dedicated to improving cancer care for LGBTQI+ communities; as well as Katie Rizvi – YCE Co-founder and Executive Director, patient advocate and leading voice on AYA cancer care and health equity; and Carmen Monge – Health Equity Researcher at YCE, with expertise in policy analysis and advocacy for marginalised communities. The webinars will also include 20 patient advocates and panellists from over 12 countries, representing diverse experiences and care journeys across at least 8 European healthcare systems. Discussions will spotlight cross-border healthcare challenges, cultural sensitivity, mental health access, and financial barriers.

With gratitude to our generous sponsors for supporting YCE’s efforts in advancing Equity, Diversity and Inclusive Cancer Care

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.

The biggest meeting of the European Network of Youth Cancer Survivors kicks off in Romania!

Posted on August 7, 2024August 7, 2024 by Florin Barnea

Our excitement levels are going through the roof as we prepare for the grand finale of our EU-CAYAS-NET project: the European Network of Youth Cancer Survivors Closing Event!

Young people from all over the continent will be joining us in Cluj-Napoca, Romania’s second-largest city, known as ‘The Heart of Transylvania’, from August 7 to 12, 2024.

Important Event Files

The event is organised by Youth Cancer Europe, in collaboration with the project Associated Partner and Cluj-Napoca-based organisation, Asociația Little People Romania. The much-awaited Closing Event brings together all project participants, associated partners, and people living with and beyond cancer from a record 32 countries to celebrate the accomplishments of the two-year EU co-funded project.

The program will feature networking events and workshops aimed at exchanging knowledge and showcasing project outcomes. Topics covered will include Adolescent and Young Adult (AYA) cancer care, Mental Health, Quality of Life, Cancer Survivorship, Equity, Diversity & Inclusion (EDI) in cancer care, and more.

To top it all off, our attendees have also been invited along to UNTOLD, one of Eastern Europe’s biggest music festivals, as part of the activities organised by YCE to celebrate this milestone occasion – including exclusive meet & greets with some of the festival’s headline acts, which will offer young people the unique chance to go backstage, meet, talk, and engage with the artists.

Let’s celebrate two years of hard work, dedication, and incredible achievements!

Participants can also view or download the closing event’s info booklet here – we strongly recommend giving it a thorough read before you arrive in Cluj-Napoca to ensure you’re ready to join in the celebrations!

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

To stay up to date with all things Youth Cancer Europe, make sure to subscribe to our newsletter here.

Youth Cancer Europe participates in EU’s Cancer Mission Consultations

Posted on July 6, 2024October 23, 2024 by Florin Barnea

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.

Youth Cancer Europe’s team on the stage of the European Commission Directorate-General for Research and Innovation (DG RTD) conference on “Addressing the Needs of Young Cancer Survivors”

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.

Ana Amăriuței, patient advocate at Youth Cancer Europe and Biomedical Science PhD student at the University of Sheffield, talked about the importance of equity in delivering Adolescent and Young Adult (AYA) Care services across Europe.

Ana emphasised the mental health burden of cancer survivors, a particularly important aspect to be considered especially after treatment, during the remission phase, when patients eventually start fully realising the impact cancer is having on their lives.

Victor Gîrbu, Patient Advocate at YCE and Member of the WHO Youth Council spoke at the “Inequalities for Childhood and Adolescent Cancer Survivors” session, where he talked about Adolescent and Young Adult (AYA) cancer patients in many geographic regions of Europe being unable to receive appropriate medical care and inequalities experienced by marginalised populations, for example, young people from LGBTQ+ communities.

In this session, young cancer survivors, 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.

Nicola Unterecker, Patient Advocate at YCE, spoke during the “Research actions to address survivorship” session. This session focused on the efforts of developing more specific, effective, and less toxic treatments, as well as investing to better understand and manage adverse effects during and after treatments.

“Research needs to shift from killing cancer to curing people better. We need research that looks at real-life survivorship issues. No data means no hope for effective policy changes”, said Nicola.

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.

Further emphasising the need for more data in Adolescent and Young Adult (AYA) Cancer Care, Katie spoke about STRONG-AYA, an EU-funded project where YCE leads patient engagement, and FORTEe project, running the largest randomised controlled trial amongst children and adolescents with cancer to create high evidence for the use of precision exercise interventions, for exercise therapy in oncology to become evidence-based standard in the EU.

To have evidence-based strategies for healthy living, good mental health, nutrition, physical exercise, and a healthy environment as cancer prevention (as well as ameliorating and preventing late effects, secondary cancers, and comorbidities), we need more studies aimed at social determinants of cancer, something that Youth Cancer Europe is militantly advocating for and was eager to discuss on this consultation.

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.

For more updates follow our social media channels (Instagram, Facebook, LinkedIn) and join the conversation on #MissionCancer.

Join us at the biggest meeting of the European Network of Youth Cancer Survivors

Posted on April 17, 2024April 17, 2024 by Florin Barnea

Our remarkable project deserves an equally remarkable ending!

Join us from 7 – 12 August 2024 in Cluj-Napoca, Romania, at the UNTOLD Festival for the grand finale of our EU-CAYAS-NET project!

Young people aged 18 and above, living with or beyond cancer, are invited to register their Expression of Interest below for the chance to win a full pass ticket to UNTOLD, regardless of prior project participation.

Travel expenses and accommodation in student dorms are included.
While registration is open to the public, spots are limited. Selection will be made on a first come first served basis.

UNTOLD is one of Europe’s largest electronic music festivals and this edition will feature top artists like Martin Garrix, Sam Smith, Swedish House Mafia and Lenny Kravitz. Exclusive meet-and-greet opportunities will be arranged, offering some selected young cancer survivors the unique chance to go backstage, meet, talk, and engage with the artists.

The event is organised by Youth Cancer Europe and will gather all project participants and associated partners to celebrate the accomplishments of the two-year EU co-funded project. Topics of discussions and activities will include adolescent and young adult cancer care, mental health, quality of life, cancer survivorship, health equity, and more.

Let’s celebrate two years of hard work, dedication, and incredible achievements!

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

To stay up to date with all things Youth Cancer Europe, make sure to subscribe to our newsletter here.

Co-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or the European Health and Digital Executive Agency (HaDEA). Neither the European Union nor the granting authority can be held responsible for them.

Recommendations for Equitable, Diverse, and Inclusive Cancer Care launched at the European Parliament

Posted on April 16, 2024December 24, 2024 by Florin Barnea

The European Parliament event organised by Youth Cancer Europe and hosted by MEP Stelios Kympouropoulos brought discrimination into focus and addressed the needs of minorities, vulnerable groups and disenfranchised communities like Roma, LGBTQ+, immigrants, and other underserved populations in the cancer care setting.

The Recommendations were developed collaboratively and the process was led by young people living within and beyond cancer in the Equity, Diversity, and Inclusion (EDI) workstream overseen by YCE, as part of the European Commission co-funded European Network of Youth Cancer Survivors project.

Based on our findings, we focused on four important areas to ensure fairness and inclusivity in cancer care:

Race, ethnicity, culture, refugee, or migrant status:
To address disparities and ensure equitable access to cancer care for individuals from diverse racial, ethnic, and cultural backgrounds, including refugees and migrants.
Gender identity and sexual orientation:
To promote awareness and support for LGBTIQ+ individuals affected by cancer, ensuring they receive respectful and inclusive care regardless of their gender identity or sexual orientation.
Age, physical and mental development, and wellbeing:
To recognize the unique needs of individuals at different stages of life, including children, adolescents, and young adults, and recognise mental health status and neurodiversity as important determinants of health outcomes.
Education, career, and socioeconomic status:
To address social determinants of health and ensure that individuals from all socioeconomic backgrounds have access to quality cancer care, regardless of their education level, career status, or living conditions.

RECOMMENDATIONS

Our recommendations for strengthening EDI in research: improving patient data collection and enhancing research team diversity

EU member states should systematically and within legal bounds improve the data they hold for ethnicity, LGBTIQ+ identity, psychosocial development, quality of life, physical and mental health, education, socioeconomic status and employment rights of cancer patients. The EU should work towards a standardised data collection that is shared via the EU Health Policy Platform alongside other major EU initiatives. An equal weight should be given to efforts to increase diversity and inclusion in healthcare and research personnel.

Our recommendations for improving EDI in cancer services: providing culturally sensitive care and promoting diverse representation in care teams

Cancer services should develop, improve, and implement culturally sensitive care, ensuring that patients receive support that respects their cultural, psychosocial, financial, educational, reproductive, and sexual needs. Inclusive cancer services also require the promotion of diverse representation in care teams to better reflect the communities they serve. Patients with lived experience should be actively engaged in health strategy development, funding decisions and building services and the co-creation of new policies related to their care, fostering a collaborative approach that prioritises their unique perspectives and needs.

Our recommendations for fostering diversity and inclusion within patient organisations

Patient organisations should have a more proactive approach to achieving diversity and inclusion by actively recruiting individuals from diverse backgrounds, providing training on cultural competency and sensitivity, and implementing policies and practices that promote inclusivity and equity within the organisation. By embracing diversity and inclusion, patient organisations can better serve their communities and advocate for more equitable healthcare policies and services.

We also urge the Commission to prioritise the integration of equity, diversity, and inclusion (EDI) principles throughout all EU health initiatives with dedicated funding and resources for research, programs, and interventions aimed at addressing disparities in cancer prevention, diagnosis, treatment, and survivorship among marginalised and underserved populations, and look at social determinants beyond the currently captured data in the Inequalities Register.

Additionally, the Commission should promote the development and implementation of EDI-focused policies, guidelines, and best practices across EU member states to ensure equitable access to quality cancer care for all individuals, regardless of their socio-economic status, ethnicity, gender identity, sexual orientation, age, or other factors.

Read the full English version of our Policy Paper here

Recommendations for Equitable, Diverse, and Inclusive Cancer Care in Europe

Find the translations of the Policy Paper in

Building on the findings that informed our recommendations, Youth Cancer Europe organised together with Inclusive Employers the ”Equity, Diversity and Inclusion Principles in Cancer Care” Training Event while launching the Train-the-Trainer Toolkit as part of the European Network of Youth Cancer Survivors European Commission co-funded project.

The face-to-face training and in-person workshops were tailored for three distinct audiences, featuring dedicated sessions for each:

Researchers, Academics, and Educational Institutions: Effective research requires diversity monitoring. Excluding individuals from vulnerable groups risks under-serving those most affected and perpetuating biases that devalue their experiences.
Clinicians and Healthcare Providers: the Train-the-Trainer Toolkit aims to improve individual healthcare interactions, patient experience and thereby improve overall health outcomes.
Patient and Community Organisations: EDI training for these organisations is a way of avoiding a “one size fits all” approach. Successful patient-facing organisations offer tailored support for cancer patients and survivors from minority groups.

All training sessions, incorporating the Train-the-Trainer Toolkit, were developed in partnership with patients, academics, and healthcare providers to ensure they tackle real-world challenges and offer practical strategies for promoting Equity, Diversity, and Inclusion in cancer care.

The event organised by Youth Cancer Europe served as a pilot for a Train-the-Trainer Toolkit designed to suit the participants’ specific roles within the healthcare system. Having a strong focus on the unique needs of groups that are underrepresented, this Toolkit aims to empower participants to return to their institutions, disseminate the information, and actively contribute to more equitable and comprehensive cancer care outcomes.

All participants received a workbook to support their learning during the training sessions and provide additional information. This will enable clinicians, researchers, healthcare providers, and patient advocates to incorporate different tools and techniques into their daily work to ultimately improve the quality of care for young people living with and beyond cancer. The training sessions covered a wide variety of topics like cultural awareness, recognizing inequality, inclusive communication, creating a safe environment, supporting families, empowering patients, addressing discrimination, conducting comprehensive needs assessments, employing inclusive research techniques, effective advocacy, and much more.

Access the full English version of the “Equity, Diversity and Inclusion Principles in Cancer Care” Train-the-Trainer Toolkit HERE

Access the Train-the-Trainer Toolkit in other languages:

With gratitude to our generous sponsors for supporting YCE’s efforts in advancing Equity, Diversity, and Inclusive Cancer Care

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.

Caring for Ukrainian Cancer Patients: 20 months of YCE’s support

Posted on November 22, 2023September 18, 2024 by Katie

Today, after 20 months since the conflict began, Youth Cancer Europe is still standing with unwavering determination to assist Ukrainian cancer patients in the midst of the ongoing war.

Throughout this challenging period, our mission remains unchanged: to ensure that Ukrainian people living with and beyond cancer have access to the essential treatment and cancer care they require.

Our Ongoing Efforts

Right from the beginning, YCE members, staff and volunteers jumped into action and organized a coordinated response and operational support for cancer patients in the country. On February 26th, just two days after the conflict began, we launched our crisis response.

Our primary focus has been on gathering information and facilitating communication with Ukrainian cancer patients. We’ve worked tirelessly to ensure that they are aware of the free medical services and specific cancer medicines and/or therapies for Ukrainian refugees in different European countries. Moreover, we’ve provided guidance on EU legislation, country-specific regulations, and legal provisions. We’ve gone the extra mile to assist patients with registration processes,in order to access health services.

Our Strong Ties with the Ukrainian Community

Throughout these challenging times, we’ve stayed as close as possible to our dearest members from Ukraine. We hosted a special “War and Cancer” online webinar. It was a powerful moment where we connected with our Ukrainian people, listened to their inspiring stories of resilience, courage and strength, as they shared their experiences of traveling across borders for cancer treatment in various parts of Europe.

Below you can also find:

We’ve been staying close with our awesome Ukrainian patient community in Cluj-Napoca by having regular meet-ups. Together, we attended the World Cancer Concgres 2022 and we had an incredible time at the Untold festival, making great memories together.

Earlier this year, we had the pleasure of having Nicoleta Pauliuc, Romanian Senator and a dedicated member of the National & European Parliamentarians for Cancer Action attending one of our special events dedicated to Ukrainian refugees who are cancer patients and benefitted from YCE’s evacuation and operational support, currently accessing cancer therapy in România.

Teamwork Makes the Dream Work!

All this time, UICC – Union for International Cancer Control was our constant ally in this fight so we wish to express our heartfelt appreciation. With their continuous support, we’ve reached countless cancer patients and their families, helping them find safety in neighboring nations and secure the life-saving treatment they urgently require.
YCE has also worked closely with The Little People Romania, a cancer charity, who have played an important role in coordinating the efforts for Ukrainian cancer patients.

YCE’s Ongoing Mission

The fight continues, but so does our commitment. As long as the war continues and patients need our help, Youth Cancer Europe will remain dedicated to:

Guiding and Connecting: We’ll be here to guide patients and connect them with the right clinics and healthcare professionals who can provide the care they require.

Connecting to Local Support: We’ll continue to connect patients to local NGOs and aid organizations, ensuring they receive the support and resources they need.

Offering aid in the translation of medical and legal documents

Supporting patients and their families to get safe and appropriate housing, food, and social care

Provide Mental Health support through peer support

You can count on us to keep you updated with the latest news and our exciting progress. Just make sure you keep an eye on our social media channels.

To stay up to date with all things Youth Cancer Europe, make sure to subscribe to our newsletter here.

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.

YCE in a Policy Dialogue on mental health with EU Health Commissioner

Posted on March 7, 2023March 7, 2023 by Katie

Earlier this month YCE patient advocates Nicola Unterecker and Mariana Coutinho have been invited to
take part in a youth policy dialogue towards a comprehensive approach to mental health with
Commissioner Stella Kyriakides, in Brussels.

Nicki and Mariana shared their personal stories and highlight the struggles faced by young people living
with and beyond cancer, talking about loneliness, isolation, health anxiety, concerns about returning to
work, changes to family dynamics, and more, all the while emphasizing the need for free and specialized
mental health services for all young adults with cancer, before and after treatment.

Speaking at the event, Mariana shared her last year’s personal experience of loneliness and isolation
during cancer treatment, pointing out the absurdity of patients having to pay for mental health services
that should be free.

“I tried to seek the help of a psycho-oncologist in a public hospital, but I would have needed to wait for
several months, so I ended up paying out of pocket for private appointments”, stated Mariana.

She called on the European Commission “to improve access to mental health services, through funds
allocations and more innovative services” that would enable cancer patients and survivors across the EU
to receive appropriate and free mental health care.

From left to right in the picture, Nicola Unterecker and Mariana Coutinho.

“The fear of reoccurrence, depression, PTSD, isolation, body image issues due to changes caused by medications, loss and grief are daily struggles for many cancer fighters and survivors, including me. There are so many burdens on us already. Finding mental health support and being able to afford it should not be an additional one” said Nicola in her powerful intervention.