Florin Barnea, Author at 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 Ana-Maria Totovina presents our work on Adolescent and Young Adult (AYA) at the Romanian Parliament

Posted on July 19, 2024September 18, 2024 by Florin Barnea

YCE patient advocate Ana-Maria Totovina represented the voice of Romanian patients and youth cancer survivors at a conference held at the Romanian Parliament on the National Day of Cancer Survivors hosted by Senator Nicoleta Pauliuc.

Ana presented our work within the European Union Co-funded project European Network of Youth Cancer Survivors, where we lead the Adolescent and Young Adult (AYA) Cancer Care Work Package! As the co-leader of the AYA Work Package, Ana shared insights about the peer visits we conducted, the guided tours to outpatient and inpatient clinics, the group discussions with healthcare professionals, the range of AYA services offered in different hospitals, and the various materials designed for young people. All of these helped us formulate and develop specific recommendations to address the real needs of youth cancer patients and survivors.

Ana’s personal experiences added a layer of vulnerability to the discussion, as she highlighted critical yet often neglected issues regarding the needs of oncology patients. She stressed the importance of recognizing Adolescents and young adults (AYAs) as a distinct group within healthcare, ensuring access to mental health services during and after treatment, preserving fertility for both genders, offering sexual health counseling, and involving patients in interdisciplinary care discussions. Implementing these measures would greatly improve the overall experience for cancer patients.

“I would like to bring to your attention a very important topic to me and to the young patients I’ve worked with: the specific needs of Adolescents and Young Adults (AYAs). As part of my role in coordinating the Adolescent and Young Adult (AYA) Cancer Care Work Package within the European Union Co-funded project European Network of Youth Cancer Survivors, I visited several hospitals in Italy, Belgium, and the Netherlands. There, I observed how the medical system is beginning to adapt to the specific needs of AYAs and involve them in the implementation of new cancer care procedures.

During these visits, 30 young cancer survivors observed the healthcare professionals’ environment, interacted with staff and patients, conducted interviews, and noted specific aspects of care for Adolescent and Young Adult (AYA) Cancer Care. They focused on specific aspects of care for Adolescents and Young Adults (AYAs), including long-term follow-up of late effects and transition from pediatric to adult oncology. After each visit, a structured report was completed, which enabled us to write specific recommendations that directly address and reflect the real needs of AYA patients:

More specific information tailored to Adolescents and young adults (AYAs)
Recognizing Adolescents and young adults (AYAs) as a unique group in all healthcare areas
Accessible Mental Health Care tailored to Adolescents and Young Adults (AYAs), available both during and after treatment.
Include fertility counselling and treatment options for fertility preservation and reproductive planning before, during, and after cancer treatment.
Sexual health counselling
Invest in Training, Education, and Resource Optimization for Healthcare Professionals to provide a more tailored cancer care
implementation of specific and targeted Adolescents and Young Adults (AYAs) policies and practices
Engaging Adolescents and Young Adults (AYAs) to participate in Care Discussions and Shared Decision-Making and the list goes on”

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

Read more on our General Report on Adolescent and Young Adult (AYA) Cancer Care HERE.

Watch the video from the “Peer Visit as Research Method” Training in Brussels HERE.

Watch the video from our Peer Visits 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:

Youth Cancer Europe’s Webinar on Equity, Diversity, and Inclusion in Cancer Care

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

On April 30th, 2024, Youth Cancer Europe hosted an insightful webinar on Equity, Diversity, and Inclusion (EDI) in Cancer Care. This event, part of the European Union Co-funded project European Network of Youth Cancer Survivors, brought together researchers, healthcare professionals, patient advocates and or interested members of the public to discuss the current state and future directions of EDI in Cancer Care across Europe.

Watch the full webinar HERE and the most important highlights HERE

Insights from the launch of the “Recommendations for Equitable, Diverse, and Inclusive Cancer Care in Europe” Policy Paper at the European ParliamentThe webinar included discussions, insights and perspectives from participants, speakers and authors of the EDI Policy Paper we recently launched at the European Parliament. The event 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. This event marked a significant milestone in our efforts to address disparities and promote a more Equitable and Inclusive European Cancer Care for all patients.

Read the full English version of our “Recommendations for Equitable, Diverse, and Inclusive Cancer Care” Policy Paper HERE.

Engaging Panel DiscussionsPatient Advocates Levi Klubal, Carmen Monge-Montero, and Erik Sturesson shared personal insights on the challenges faced by marginalized groups in accessing quality cancer care. Urška Košir, YCE’s Scientific Advisor, along with Carmen Monge-Montero, YCE’s Researcher and Patient Advocate, provided an in-depth look at the co-creation process of the policy recommendations within the EU-CAYAS-NET framework. They highlighted the collaborative efforts of researchers, patient advocates, and healthcare professionals in developing comprehensive recommendations that address the unique needs of youth cancer patients. The main policy recommendations were presented, offering a clear and actionable roadmap for implementing Equity, Diversity, and Inclusion (EDI) principles in Cancer Care. Johan de Munter, Nurse Manager at the Cancer Center of University Hospital Ghent, and Diana Todea, Psychologist at Little People Romania, offered valuable insights into the practical challenges and opportunities of implementing EDI in healthcare settings. Their discussion included strategies to promote inclusive cancer care and practical recommendations tailored for healthcare providers.

These Recommendations are designed to guide healthcare providers, institutions, and policymakers to create and foster a more inclusive environment that effectively addresses the needs of cancer patients. The Policy Paper offers concrete steps for improving Equity, Diversity, and Inclusion (EDI) in Cancer Care at the individual, institutional, and societal levels.These Recommendations are designed to guide healthcare providers, institutions, and policymakers

The webinar concluded with a summary of key takeaways from our work within the EU-CAYAS-NET Equity, Diversity, and Inclusion (EDI) Work Package, as well as more information about the EDI Training sessions and Train-the-Trainer Toolkit launch.

Watch the full webinar HERE and the most important highlights HERE

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.

From Prejudice to Progress: Youth Cancer Europe’s Round Table and Workshops on Equity, Diversity & Inclusion

Posted on June 6, 2024June 7, 2024 by Florin Barnea

Between the 5th and 8th of November, Youth Cancer Europe hosted the ‘From Prejudice to Progress: Discrimination, Equity, Diversity & Inclusion Round Table and Workshops‘ event as leaders of Work Package 5 within the European Network of Youth Cancer Survivors, a project funded by the European Commission to deliver on Europe’s Beating Cancer Plan.

The event focused on the development of an Equity, Diversity & Inclusion (EDI) Training Toolkit for healthcare professionals, researchers, and patient support organisations that will be launched in 2024.

This event was the perfect opportunity to:

Gather input from patient advocates, researchers, healthcare professionals, and policymakers. This information will help us to better design and customise the content of the EDI Training Toolkit.
Create meaningful connections as the training vendor met and engaged with our community of young cancer survivors and patient advocates.
Explore the challenges, opportunities, and strategies related to equity, diversity, and inclusion in cancer care and focus on the specific needs of the 3 main groups that need to be trained: Clinicians/Healthcare Providers, Researchers, and Patient/Youth Advocates
Align on the desired outcomes for the upcoming EDI Training in April 2024 and make sure that we have a shared understanding of the goals we want to achieve.

We kicked off the event with an engaging Round Table with Romanian and International experts as panellists: public health specialists, global inclusion leaders, healthcare providers, researchers, and expert speakers on challenges faced by minority populations, moderated by Katie Rizvi, Youth Cancer Europe’s executive director.

The discussion addressed issues like the insufficient European data on cancer outcomes among ethnic minorities, migrants, refugees, and disparities within the LGBTQ+ community.

Moving from awareness to action, YCE’s patient advocates Carmen Monge-Montero, Victor Girbu, Brad Gudger, and Stewart O’Callaghan provided updates on their research, including the European EDI survey that was launched earlier this year.

Acknowledging the critical gaps in the EU’s Beating Cancer Plan, Victor Girbu, Youth Cancer Europe patient advocate co-leading Work Package 5, emphasised the need to address diverse populations’ unique needs and barriers. “The EU’s Beating Cancer Plan acknowledges that major disparities exist between and within Member States. However, some critical gaps remain. For example, the plan notes differences in survival rates and access to screening programs, but does not sufficiently address diverse populations’ unique needs and barriers” stated Victor.

“The EU’s Beating Cancer Plan acknowledges that major disparities exist between and within Member States. However, some critical gaps remain. For example, the plan notes differences in survival rates and access to screening programs, but does not sufficiently address diverse populations’ unique needs and barriers”
Victor

Behind the Scenes of the EDI Toolkit Development

In the second part of the event, we engaged in multiple lively workshop sessions where we explored together the particular cultural, political, or social challenges and wrong assumptions we need to address in order to develop the Equity, Diversity, and Inclusion Training and Toolkits for the three distinct audiences of healthcare providers, researchers, and patient organisations.

We asked key questions like:

What inclusion topics are not currently considered in healthcare?
What groups and communities experience challenges or oppression and what can we actively do about it?
How can cultural awareness best support inclusion in the healthcare setting and help provide care successfully in a given region?

We also took our time to discuss what matters to young people but often gets overlooked by older generations.

We want to extend our gratitude to everyone who took part in the event – patient advocates, public health experts, healthcare providers, and researchers! A special shout out to all the panellists and the participants Emily Pattinson, Katie Rizvi, Razvan Chereches, Ruth Borgfjord, Delia Nicoară MD, Istvan Laszlo, Esraa Abdallah, Carmen Monge-Montero, Nisa Eszter Rizvi, Brad Gudger, Shajjad Rizvi, Anna Zettl, Johan De Munter, Oana Rusu, Hilda Hajdu, Laura Cristea, April Dorenbosch, Erik Sturesson, Cristina Trifulescu, Nataliia Hrad, Victor Girbu, Karl-Smith Bryne, Hanna Ryzhkova.

You can read more about our Round Table speakers and the topics we talked about. Plus, over here, you can check out the complete programme and general information about the event!

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.

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.

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