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.
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.
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”
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 tobetter 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 theEU 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.
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 projectshere.
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.
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
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 Toolkitas 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:
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?
The FORTEe project aims to demonstrate that precision-based exercise training during cancer treatment in CAYAs is a safe and potentially effective therapy to counteract fatigue, maintain strength, coordination, and overall improve quality of life. For the exercise training, no specific facility is needed, many exercise routines can be done in the patient’s room! Carefully crafted by the FORTEe consortium, these illustrations are part of training and testing guides, assisting young cancer fighters and their physicians and physiotherapists through exercise routines, specifically tailored for each patient’s journey.
All rights reserved; reproduction or use of the illustrations requires prior permission from the copyright owner, F. Lanfranconi et al.
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.
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 refugeeswho 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.
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.
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!
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.
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.
Nicola Unterecker and EU Health Commissioner Stella Kyriakides
Ana Amăriuței, patient advocate at Youth Cancer Europe and Biomedical Science PhD student at University of Sheffield, originally from Romania, shared her own story of childhood cancer in a high-level event hosted by European Commission’s Stella Kyriakides and Acko Ankarberg Johansson, Swedish Minister of Health Care.
(Stockholm, Sweden) 1st of February 2023 – In the run up to World Cancer Day 2023 the European Commission and the Swedish Presidency of the Council of the European Union co-organised a high-level conference on cancer. The conference took place under the title “Equity, excellence, and innovation – modern cancer care for all, Europe’s Beating Cancer Plan – eradicating inequalities within cancer care”
Following keynote speeches from Acko Ankarberg Johansson, Swedish Minister of Health Care, EU Commissioner Stella Kyriakides, Dr. Hans Kluge, WHO Regional Director Europe, Dr. Douglas R Lowy, Principal Deputy Director, National Cancer Institute and Spanish Minister of Health, Carolina Darias San Sebastián, Ana Amăriuței delivered a powerful and emotional speech, addressing topics such as Equity, Diversity, and Inclusion and spoke about EUCAYASNET, the first-time-ever EU funded project, coordinated and managed by young people with lived experience of cancer.
Ana called on the Swedish Presidency of the Council of the European Union and the European Commission “to provide a sense of unity and security by ensuring appropriate access to medical care to every single cancer patient in Europe regardless of their gender, race, socioeconomic status, sexual orientation, place of birth and residency, religious or spiritual beliefs” as all stakeholders work towards eradicating inequalities in cancer care.
Speaking at the event, Ana said: “We owe these changes to our loved ones and the cancer patients who are no longer with us and for whom we were too late to make a transformation, but most of all, to all those 2.7 million Europeans who are diagnosed each year with cancer”.
In addition to presenting the latest deliverables under the EU Cancer Plan, participants at the conference discussed three main topics: prevention, early detection, and the conditions for data-driven cancer care.
From left to right in the picture: Stella Kyriakides EU Health Commissioner, Ana Amăriuței, Biomedical research PhD student and YCE patient advocate, Mia Rajalin, Vision Zero Cancer and Lung Cancer Association, Acko Ankarberg Johansson, Swedish Minister for Health Care and Carolina Darias San Sebastián, Spanish Minister of Health.
Youth Cancer Europe will speak at the Economist’s 8th Annual World Cancer Series Europe, to be held in Brussels on 8-9th November 2022. More than 90 speakers will explore best-practice solutions to improving care and patient outcomes, aligned with the EU Beating Cancer Plan, identifying strategies to reduce inequities and encourage innovation through treatment and technology.
YCE’s Katie Rizvi will be joining the 8th November 10:25 am -11:05 am CET Panel “The future of European cancer control in a time of crisis”,speaking about our response to queries and requests of Ukrainian patients needing continued cancer therapy outside of the war-torn country. Please see the detailed Agenda here.
YCE members can register to attend free via the link below
