cancer patient advocate Archives - Youth Cancer Europe (YCE)

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.

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.

YCE’s Nicola Unterecker speaks at the European Commission’s World Mental Health Day Conference

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

On October 10, Youth Cancer Europe’s patient advocate Nicola Unterecker, took the stage at the European Commission’s World Mental Health Day Conference, hosted by Stella Kyriakides, European Commissioner for Health and Food Safety.

This event brought together EU institution representatives, national government officials, passionate patient advocates, and international organizations, all united in their commitment to addressing critical mental health issues.

During the event, attendees engaged in discussions concerning three essential topics:

Mental Health Across All Policies
Promotion & Prevention
Equal Access for All

In her heartfelt speech, Nicola Unterecker shared her personal journey as a young cancer survivor, shedding light on the challenging aspects of life after treatment: “surviving cancer at a young age is a whole different battle altogether. Once treatment finishes, reality hits like a truck. The support system we had during treatments evaporates into thin air. Once on a battlefield, our body starts to heal, but our mind grapples with the aftermath. We find ourselves face-to-face with cancer’s profound impact on our lives.”
Nicki talked about the unseen burden of cancer survivorship, a topic we addressed in our 2018 White Paper when we discussed the short-term and long-term mental health problems and all the psychological effects that are often not recognized by healthcare professionals and are therefore not treated adequately.

Mental Health is one of the priorities set out in our White Paper, calling for action on Financial Discrimination, Cross-Border Healthcare, Fertility Preservation, and more. Read the full White Paper HERE.

Nicki also talked about how she discovered Youth Cancer Europe, the community she never asked to be a part of, but that has become her strength to help her not just to survive but thrive. “In 2019, amidst battling a relapse, I had the privilege of meeting Katie Rizvi, the co-founder of Youth Cancer Europe. My encounter with this phenomenal group of individuals from so many different countries and social backgrounds changed everything. The energy and passion they radiated left me in awe and they welcomed me with open arms, reminding me I wasn’t alone. Instead, we shared an unbreakable bond, fueled by the desire for a better future. As the years went by, our group flourished, our voices grew loud, and our projects expanded. Today, I stand here as living proof that cancer does not define us; it unites us. It brings us together in ways we never thought possible. And with organizations like Youth Cancer Europe and the European Network of Youth Cancer Survivors, we are not only surviving, but thriving” said Nicola Unterecker.

Watch Nicola’s full speech here

Nicola Unterecker’s presence at the European Commission’s World Mental Health Day Conference served as a reminder of how imperative it is to address and advocate for affordable and accessible mental health support.

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.

Unveiling the “Recommendation and Implementation Roadmap for Minimum Standards of Specialist Adolescent and Young Adult (AYA) Cancer Care Units” Position Paper

Posted on July 6, 2024September 18, 2024 by Florin Barnea

After visiting 5 European hospitals last year to learn and observe the best practices in Adolescent and Young Adult Cancer Care (AYA oncology) as part of the European Union Co-funded project European Network of Youth Cancer Survivors, our “Recommendation and Implementation Roadmap for Minimum Standards of Specialist Adolescent and Young Adult (AYA) Cancer Care Units” Position Paper is ready to be unveiled!

Read the full English version of our “Recommendation and Implementation Roadmap for Minimum Standards of Specialist Adolescent and Young Adult (AYA) Cancer Care Unit” Position Paper HERE.

Adolescents and young adults (AYAs) facing cancer represent a unique and often underserved population within Europe’s healthcare landscape. Adolescents and Young Adults (AYA) with cancer, aged between 15 and 39 years at the time of diagnosis, experience distinct biological and psychosocial needs, but despite their increasing recognition, AYAs still encounter inequitable access to age-appropriate oncology services. Specialised services often remain limited to major centres in Western and Northern Europe, large urban areas, or private settings. As a result, smaller centres, rural areas or non-specialist services contribute to disparities in Adolescents’ and Young Adults’ (AYAs’) access, the care offered, and outcomes, underscoring the critical need for a concerted effort to advocate for and establish Minimum Standards of Specialist Adolescent and Young Adult (AYA) Cancer Care Units.

Leading the Adolescent and Young Adult (AYA) Cancer Care Work Package within the European Network of Youth Cancer Survivors project, Youth Cancer Europe facilitated three Peer Visits between May and July 2023.

Peer Visits represent an innovative and creative approach to research that integrates both observational and participatory elements. In our project, 30 young people living with and beyond cancer – members and ambassadors of the European Network of Youth Cancer Survivors – had the opportunity to be physically present on-site and visit the hospitals.

This enabled them to closely observe, interact, engage with healthcare professionals and other service providers, conduct interviews, and note specific aspects of care for Adolescents and Young Adults (AYAs) with cancer. They focused on specific aspects of care, including long-term follow-up of late effects and transition from paediatric to adult oncology.

Below are some of the statements shared by the Peer Visits participants:

“Peer visits allowed us to gain a more comprehensive view of the best practices across Europe. These visits also allow us to strengthen our ties with the Adolescents and Young Adults (AYAs) who are involved in the network and gain a greater desire to remain active in the patient advocacy field. Moreover, I think to be a patient advocate it is crucial to have a vision beyond our personal, up-to-date experience. I hope all of this work will result in a push for rapid improvement in healthcare for cancer patients and survivors in Europe, minimising disparities”

“Being able to visit other institutions and observe best practices is highly educational and useful as a patient advocate. It gives a foundation for arguing for AYA’s special needs and for what we should be able to achieve locally”.

Three types of observation were used:

naturalistic observation where the peer visit participants observed the environment where the healthcare professionals were working;
participatory observation where the participants conducted interviews, took notes and photographs;
structured observation, where the participants observed specific aspects of AYA care, filling in a Peer Observation Form.

The primary goal of the Peer Visits was to observe best practices, and identify any gaps in the already existing services. The overarching objective was to enhance our understanding of how AYA cancer care can be elevated and transformed across European countries. All the insights were gathered through structured Peer Observation Forms, structured surveys, personal notes, and semi-structured interviews with both local patients and healthcare personnel.
This gathered data contributed to the creation of the our “Recommendation and Implementation Roadmap for Minimum Standards of Specialist Adolescent and Young Adult (AYA) Cancer Care Units” Position Paper, reinforcing the efforts of EU-CAYAS-NET to improve the quality of life of AYA cancer survivors within the European Union and beyond. This Position Paper resulted from a mixed-method and interdisciplinary approach, integrating insights from Adolescents and Young Adults, healthcare providers, researchers, and other stakeholders. It calls on policymakers, healthcare professionals, and advocacy groups to prioritise the specific needs of Adolescents and Young Adults (AYAs), ensuring they have access to high-quality care that addresses all aspects of their health and well-being.

After each visit, a structured report was completed, which enabled us to write specific recommendations that are comprehensive, evidence-based, and actionable, described in two parts:

A Checklist for Minimum Standards of Care organised into three chapters:

Age-Appropriate Built Environment
Clinical Care Organization and Patient Pathways
Support Services

An Implementation Roadmap with eight recommendations

Develop a National Knowledge Hub
Invest in Training, Education, and Resource Optimization
Integrate Adolescent and Young Adult (AYA) – specific Care Across All Cancer Treatment Settings
Expand Access to Mental Health Services
Empower Adolescents and Young Adults (AYAs) Through Participation in Care Discussions
Enhance Integration and Interoperability of Healthcare Systems and Digital Health Platforms
Promote Research and Innovation
Advocate for Policy and Practice Changes

Read the full English version of our “Recommendation and Implementation Roadmap for Minimum Standards of Specialist Adolescent and Young Adult (AYA) Cancer Care Unit” Position Paper HERE.

Below you can also find the translations of the Policy Paper in:

Peer Visits as research method for Youth with lived experience

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

On February 8, 2023 Youth Cancer Europe hosted the “Peer Visit as Research Method” Training in Brussels, Belgium, in preparation for future observational and participatory research activities in EU-CAYAS-NET.

The EU Network of Youth Cancer Survivors (EU-CAYAS-NET) is a project co-funded by the European Union’s EU4Health focused on improving the quality of life of childhood, adolescent, and young adult cancer survivors by creating a Knowledge Centre and interactive Platform for social networking and building a European Network of Youth Cancer Survivors. Led by patient advocates, EU-CAYAS-NET is part of Europe’s Beating Cancer Plan, focusing on topics like Mental Health, Quality of Life, Adolescent and Young Adult (AYA) Care, and Equity, Diversity & Inclusion in Cancer Care.

Nicola Unterecker, Youth Cancer Europe’s patient advocate, shared her passion for this project because “it’s an opportunity for us to finally make a change in a system that is so desperately needed right now for us, for future patients, for future generations.”

Anya Buchacz, Founder of Pani Ani Foundation said she is especially excited about the Peer Visit activities and the opportunity “a golden standard and not only a minimum standard for AYA Cancer Care and long-term follow-up for survivors across Europe and individually in each country”.

“To me, this network is a really good way to connect people of different backgrounds and ethnicities. There are cancer survivors who would be pretty isolated otherwise. In the last few days, people from 22 countries have shared and learned and taught really good lessons, and we’re looking forward to continuing with the project” stated Andrea Ruano, YCE’s patient advocate.

The concept of Peer Visits is rooted in observational research. In the EU Network of Youth Cancer Survivors (EU-CAYAS-NET) project, participants will be able to observe healthcare professionals and other service providers in their natural environment. Peer Visits are expected to result in valuable feedback to the collaborating institution as well as actionable takeaways for peers to support health-policy initiatives in their home countries. This form of peer learning is designed to stimulate interaction, collaborative learning and solution-building.

Youth Cancer Europe is responsible for the Peer Visits in Belgium, the Netherlands, and Italy. In 2024, YCE is responsible for several large events within the EU-CAYAS-NET project.

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, 2024October 23, 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:

Join us in the European Parliament on March 21

Posted on February 16, 2024March 19, 2024 by Katie

Youth Cancer Europe is excited to announce that our “Recommendations for Equitable, Diverse and Inclusive Cancer Care in Europe” Policy Paper will be launched in the European Parliament in Brussels!

The event will bring together Members of the European Parliament, health organisations, patient advocacy groups, and other stakeholders, and will invite young people living with and beyond cancer to share their experiences, their research findings and policy recommendations.
Discussions will have a strong focus on the needs of minorities and the especially vulnerable groups and disenfranchised communities like Roma, LGBTQ, immigrant, and other underserved populations.

The “Recommendations for Equitable, Diverse and Inclusive Cancer Care in Europe” collaborative document was developed with patients in the driving seat and benefited from large stakeholder input within the EU co-funded EU-CAYAS-NET project to deliver on Europe’s Beating Cancer Plan, resulting in recommendations that are designed to be aspirational, actionable, and most importantly, achievable.

Check out the full agenda here

The event, organised by Youth Cancer Europe, is set to take place on Tuesday, March 21, from 11-13 CET, in Room ANTALL 6Q1, and will be hosted by MEP Stelios Kympouropoulos.

Seats are limited, please register here today so we can save a spot for you!

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.