Adolescents and Young Adults with Cancer (AYAs): When a Diagnosis Comes During the Most Formative Years of Life

The unique psychosocial challenges, the invisible signs of distress, and Kapa3’s holistic response through the European MELODIC project.

A cancer diagnosis during adolescence or young adulthood often comes at a time when life is unfolding through some of its most creative and defining stages. Education, employment, romantic relationships, independence, starting a family, and planning for the future are all taking shape. A cancer diagnosis can abruptly interrupt this journey, creating a reality that is often difficult to comprehend, even for the young people experiencing it.

Adolescents and young adults with cancer, internationally referred to as AYAs (Adolescents and Young Adults), represent a distinct population within oncology. Their needs extend far beyond the treatment of the disease itself. They encompass identity, autonomy, relationships, sexuality, fertility, education, employment, financial security, and, above all, how they perceive their future and themselves.

When Life Is Put on Hold

For a young person, experiencing cancer can create the feeling that their personal life has come to a standstill while their peers continue moving forward. Friends pursue their studies, build careers, travel, develop relationships, and start families, while they may be coping with hospitalisations, treatments, fatigue, and restrictions on everyday activities.

This disruption can significantly affect their psychological well-being. Social isolation, changes in body image, concerns about sexuality and intimate relationships, and fears about potential effects on fertility are issues that may not always be easy to discuss with family members or even with the healthcare team.

At the same time, interruptions to education or employment can create financial uncertainty and undermine a young person’s sense of independence.

The impact of cancer, therefore, is not limited to the physical body. It extends to how young people perceive themselves, their identity, and their place within society.

Psychological Distress Is Not Always Visible: Recognising the Warning Signs

One of the most important challenges in caring for AYA patients is that psychological distress is not always immediately recognisable.

Distress may emerge at different stages of treatment, including after treatment has ended, and can manifest in various ways.

It may be expressed through anger towards the healthcare team, mistrust of treatment or medical recommendations, repeated questioning or, conversely, complete avoidance of questions.

It may also appear as delayed or missed appointments, difficulty adhering to treatment, excessive reliance on information found online, or reluctance to seek support from family members and social networks.

At other times, the signs are even more subtle: withdrawal from friends, reduced participation in activities, feelings of loneliness or hopelessness, or the belief that “no one can understand what I am going through.”

These behaviours should not automatically be interpreted as non-cooperation or lack of motivation. They may reflect emotional distress, uncertainty, fear, or unmet psychosocial needs that require further exploration.

This is why communication is a fundamental component of care.

An open-ended question, a safe and supportive environment, and, above all, a genuine willingness to listen without minimising a young person’s feelings can provide the starting point for identifying needs at an early stage.

Completing Treatment Does Not Always Mean the End of the Struggle

Another important message concerns the period following the completion of cancer treatment.

The end of oncology treatment is often accompanied by relief and optimism. At the same time, however, it can create a new sense of uncertainty or emptiness.

Frequent contact with the hospital and healthcare professionals gradually decreases, while young people are expected to return to everyday life and redefine their identity and future after cancer.

Fear of recurrence, changes in relationships, returning to work or education, and the need to reconsider personal goals may create new psychological challenges.

Psychological recovery, therefore, does not necessarily follow the same timeline as physical recovery.

Importantly, resilience and psychological distress are not mutually exclusive.

A young person may continue moving forward, pursuing their goals and rebuilding their life, while simultaneously experiencing fear, uncertainty, or emotional difficulties.

Recognising this complexity is essential to avoid unrealistic expectations that young people should immediately return to their previous lives or feel consistently positive once treatment has ended.

From Recognition to Meaningful Support and Effective Interventions

Addressing these needs requires an approach that sees the AYA patient as a whole person, not simply as someone undergoing cancer treatment.

Active listening, encouraging emotional expression, strengthening autonomy, and facilitating access to appropriate psychosocial support services are essential elements of comprehensive care.

Support may include psychological and social care, peer-support groups, counselling, and practical assistance related to employment, financial concerns, or social rights.

Individualisation is particularly important.

Not all young people require the same type of support, nor do they experience cancer in the same way.

Age, family circumstances, social environment, personal values, and life goals all contribute to shaping different needs and expectations.

Evidence-Informed Psychotherapeutic Approaches

Several psychotherapeutic approaches may help address the psychological and emotional challenges experienced by adolescents and young adults affected by cancer.

Cognitive Behavioural Therapy (CBT) can help young people identify and reframe unhelpful patterns of thinking, develop more adaptive coping strategies, and regain a sense of control during periods of significant uncertainty.

Acceptance and Commitment Therapy (ACT) emphasises psychological flexibility, the recognition and acceptance of difficult emotions, and engagement with personal values. This approach may be particularly relevant when illness has disrupted a young person’s priorities, identity, or future plans.

In parallel, meaning-centred approaches can support AYA patients in addressing existential concerns, changes in identity, and experiences of loss.

These interventions may help individuals integrate the experience of cancer into their evolving understanding of themselves and their lives, while rediscovering meaning, purpose, and personal direction.

The Importance of Peer Support

Peer support represents another valuable dimension of psychosocial care.

Connecting with people who have experienced similar challenges can reduce feelings of social isolation, strengthen the sense that “I am not alone,” and create opportunities for mutual understanding.

Peer relationships may also provide a supportive environment in which young people feel more comfortable discussing concerns that can be difficult to communicate with family members or healthcare professionals.

These forms of support should be adapted to individual circumstances and preferences.

Psychotherapeutic and psychosocial interventions need to be delivered flexibly, taking into account each person’s developmental stage, cultural and social context, values, and changing needs.

The therapeutic relationship, trust, respect for autonomy, and the active involvement of young people in decisions affecting their care are fundamental components of a genuinely person-centred approach.

MELODIC and the Need for More Human-Centred Cancer Care

This need lies at the heart of the European project MELODIC – Mental Health Support for Young Adults with Cancer, in which Kapa3 – Cancer Guidance Centre participates as a project partner.

MELODIC focuses on the mental health and well-being of young adults affected by cancer, aiming to strengthen the knowledge, skills, and support available to them, their loved ones, and the professionals involved in their care.

The project specifically addresses the needs of young adults aged 18–35 and seeks to promote a more integrated, supportive, and human-centred approach to oncology care.

Within the framework of MELODIC, Kapa3 has actively contributed to the co-development of educational materials, the development of the educational framework, and the pilot educational intervention in Greece.

Through this participation, Kapa3 supports the recognition of psychosocial needs and the development of knowledge and competencies among healthcare professionals working with young people affected by cancer.

This approach is directly aligned with the philosophy of holistic cancer care: mental health is not a separate or secondary concern but an integral part of the overall experience of living with cancer.

MELODIC also highlights the importance of interdisciplinary collaboration and the early identification of psychosocial needs.

By strengthening awareness and professional competencies, healthcare professionals can become better equipped to recognise signs of distress and refer young people to appropriate support services in a timely and coordinated manner.

From Identifying Needs to Developing Supportive Interventions

The MELODIC project promotes an approach that moves beyond identifying psychological challenges towards developing practical, person-centred interventions that respond to the everyday realities of young adults living with cancer.

Its broader framework recognises the value of psychosocial support, social connection, physical activity, and engagement with nature as complementary dimensions of well-being.

For Kapa3, participation in MELODIC reflects a wider commitment to connecting scientific knowledge with practical support and the lived experiences of people affected by cancer.

By contributing to European collaboration, educational activities, and the development of supportive interventions, Kapa3 seeks to help strengthen a model of cancer care that is more responsive to the individual, social, and emotional needs of patients.

This commitment also reflects the organisation’s broader work in patient navigation, health literacy, access to rights, and psychosocial support.

Because meaningful cancer care must extend beyond medical treatment and recognise the person behind the diagnosis.

Why Listening to Young People Matters

Meaningful care begins with a simple but fundamental principle: listening.

Listening to the young person who is afraid, even when they cannot express that fear directly.

Listening to the person who feels angry, withdraws from others, or struggles to follow their treatment plan.

Listening to those who appear to be coping well but may be experiencing greater emotional difficulties than they reveal.

Listening without judgement, without minimising emotions, and without assuming that the needs of all young people affected by cancer are the same.

Behind every diagnosis is a person who continues to have relationships, plans, dreams, ambitions, and a need for independence.

Through its participation in MELODIC, alongside its broader activities supporting people living with cancer, Kapa3contributes to promoting a model of care that does not end with the treatment of the disease.

A model that recognises psychological and social needs, strengthens patient empowerment, and builds bridges towards appropriate support.

A model that understands that recovery is not only about physical health but also about rebuilding confidence, identity, relationships, and the ability to imagine a future.

Because cancer care is not only about helping people recover from illness. It is also about supporting them, with dignity and understanding, as they rebuild the lives they want to live.

Learn More About MELODIC

The European project MELODIC – Mental Health Support for Young Adults with Cancer aims to promote mental health and well-being among young adults affected by cancer through interdisciplinary collaboration, education, and person-centred supportive interventions.

Kapa3 participates in the project, contributing to its activities in Greece and to the broader European effort to strengthen psychosocial cancer care.

For more information about MELODIC, its objectives, activities, and Kapa3’s participation, visit the dedicated section of our website:

https://www.kapa3.gr/melodic/

If you are a young adult aged 18–35 with lived experience of cancer and would like to learn more about the project or possible opportunities for involvement, please contact the Kapa3 team.

Kapa3 – Cancer Guidance Centre

Website: https://www.kapa3.gr
Email: info@kapa3.gr
Telephone: +30 210 5221424

Source

Ciampa, D., Mathew, L., Fulginiti, K., & Fortune-Kottis, S. (2026, August 11). Addressing unique psychosocial challenges in adolescent and young adult (AYA) patients with cancer. Oncology Central.

https://www.oncology-central.com/addressing-unique-psychosocial-challenges-in-adolescent-and-young-adult-aya-patients-with-cancer/

Further information:
European MELODIC Project – Kapa3
https://www.kapa3.gr/melodic/

Article edited by:
Elena Panopoulou
Sociologist, Kapa3 Tripoli Team

Email: elenak3team@gmail.com
LinkedIn: https://www.linkedin.com/in/elena-panopoulou-5061aa426

MYRTO evolves: from information to meaningful navigation

The new version of MYRTO, Kapa3’s digital assistant for people affected by cancer and their caregivers, is now live.

This update is more than a technical upgrade. It represents another step towards a different model of digital support: moving from simply providing information to supporting understanding, guidance and navigation.

For people facing cancer, the challenge is not always a lack of information. Very often, the real difficulty is understanding which information applies to them and what they need to do next.

From information to the next step

The cancer journey involves much more than diagnosis and treatment. Patients and families may also need to navigate social rights and benefits, disability assessment, transportation, employment issues, psychosocial support and communication with multiple health and public services.

Information may be available, but it is often fragmented, complex or difficult to turn into action.

This is where navigation becomes essential.

It means supporting people to access, understand, evaluate and use the information they need.

MYRTO was developed with this principle in mind: transforming complex and fragmented information into guidance that is easier to understand and act upon.

What is new in MYRTO

The renewed version offers a more direct and accessible user experience.

Users can interact by text or voice, listen to responses, choose between Greek and English, and adjust text size. Suggested topics also help people who may not know how to begin or how to formulate their question.

Particular attention is given to the sources behind the information. MYRTO follows a source-grounded and human-supervised AI approach: Artificial Intelligence supports the retrieval and organisation of information, while reliability, transparency and human oversight remain central to its design.

Technology does not replace people

MYRTO is not a doctor and does not provide personalised medical advice. It does not replace social workers, psychologists, nurses or other healthcare professionals.

Its role is to reduce complexity, support orientation and help people move closer to the appropriate information, service or human support.

The same approach applies to caregivers, who often become care coordinators, information managers and navigators of rights and services. MYRTO is also designed with their needs in mind, recognising caregivers as an essential part of the cancer journey.

Accessibility, trust and data protection

At Kapa3, we believe that digital innovation is meaningful only when it remains accessible and inclusive.

For this reason, the renewed MYRTO places emphasis on plain language, voice interaction and features that can support people with different levels of digital and health literacy.

Users are also informed about the processing of their data and the use of Artificial Intelligence, with separate consent choices and the possibility to request data deletion.

Trust in a digital health tool is not only about the answers it provides. It is also about how it works, which sources it relies on and how it respects the people who use it.

“What do I need to do next?”

Perhaps this single question best captures the philosophy behind MYRTO:

“What do I need to do next?”

A person facing cancer should not have to know in advance which organisation is responsible, where the right information is located or which administrative process needs to be followed.

They should be able to express their need and receive guidance that is reliable, understandable, accessible and human-supported.

This is the direction of the renewed MYRTO.

From information to understanding.
From understanding to navigation.
And from navigation to the next step.

Find more :

https://kapa3-cag-rag-hybrid-deploy.onrender.com

MYRTO: From Real-World Needs to European Scientific Engagement

MYRTO, the digital Social Rights Navigator developed by Kapa3, is taking an important step from real-world experience to the European scientific community, with two studies accepted for presentation at EONS and ESMO events in 2026.

The first study, “MYRTO as an AI-Supported Navigation Model for Equitable Access to Cancer Care: Real-World Needs from 1,083 Beneficiaries”, will be presented as a poster at EONS19 at ESMO 2026 in Madrid, 24–26 October 2026.

The study draws on the real-world needs of 1,083 Kapa3 beneficiaries, identifying eight key navigation areas: rights and benefits, disability certification and administrative procedures, access to health and social services, transportation and geographical barriers, employment and social protection, health and digital literacy, caregiver support, and referral to human professionals when needed.

The findings highlight that equitable access to cancer care is not only about clinical information. It also depends on people’s ability to find, understand and use reliable information during an exceptionally demanding period of their lives.

From real-world needs to technology evaluation

The second study, “Source-Based Artificial Intelligence (AI) Navigation for Fragmented Nonclinical Cancer-Support Information: Pilot Evaluation of a Human-Supervised System”, has been accepted as an e-Poster at the ESMO AI & Digital Oncology Congress 2026, taking place on 16–18 November 2026.

This study focuses on the operation and evaluation of MYRTO as a source-grounded, human-supervised AI system.

The pilot evaluation drew on 448 authoritative documents and 29,148 indexed excerpts and assessed 100 predefined questions. For all 84 answerable questions, source-supported and actionable responses were generated without modifications following Kapa3 expert review. The system also applied clarification, abstention or redirection mechanisms when evidence was insufficient or when questions involved medical advice or fell outside its intended scope.

Two studies, one shared philosophy

The two studies reflect complementary dimensions of MYRTO: the real-world needs that led to its development and the way technology is being designed to respond to those needs through evidence, clear boundaries and human supervision.

For Kapa3, Artificial Intelligence is not intended to replace human support. Its role is to contribute to more accessible, understandable and trustworthy navigation, while keeping people at the centre.

MYRTO’s presence at two major European scientific events represents another step in bringing Kapa3’s field experience into the European dialogue on equitable access, digital health and the responsible use of Artificial Intelligence.

The MYRTO project is funded by the TIMA Charitable Foundation.

Find more about MYRTO https://kapa3-cag-rag-hybrid-deploy.onrender.com

From access to continuity of care: when navigation becomes part of the solution

Why health systems need pathways, not just pilots

A test is not treatment. A referral does not necessarily mean that a person will reach the care they need. And a successful pilot does not, by itself, mean that a health system works for everyone.

This is the central message of a recent article by Gaurav Ghewade for the World Economic Forum, “Why healthcare systems need pathways, not just pilots.” The key question is no longer simply whether people can enter a health system, but whether the system can support them throughout the journey that follows.

In 2023, around 4.6 billion people worldwide were still not fully covered by essential health services. At the same time, chronic conditions, including cancer, require much more than a single intervention. They demand continuity, repeated contact with services, follow-up and coordinated support.

The critical question therefore becomes:

What happens after the first step?

Does a person know where to go next? Do they understand the procedures they need to follow? Are they aware of the rights and benefits available to them? Can they identify the appropriate services? Is there a clear pathway, or are they left to navigate a complex system on their own?

For people affected by cancer, the journey extends far beyond diagnosis and treatment. It can also involve administrative procedures, social and employment rights, financial and insurance benefits, access to social services, psychosocial support, caregiver needs and the return to everyday life.

This is why navigation is becoming an essential part of person-centred support.

From information to action: MYRTO

This is also the space in which MYRTO – Kapa3’s Digital Social Rights Navigator is being developed.

MYRTO does not replace doctors or healthcare professionals and does not provide treatment decisions. Its purpose is to help people affected by cancer and their caregivers access reliable and understandable information, better understand their social rights and available benefits, identify relevant services and move towards the next practical step in their journey. Kapa3 has positioned MYRTO within a broader approach to digital navigation, social accessibility and patient empowerment.

Because access is only the beginning.

What truly matters is ensuring that no one gets lost between the steps of their journey.

The development of MYRTO is supported by the TIMA Charitable Foundation, Founding Sponsor of MYRTO.

Source

Gaurav Ghewade, Why healthcare systems need pathways, not just pilots, World Economic Forum, 21 August 2026.

Modern Oncology: When Survival Is Not Enough

New therapies, “hidden” effects and the need to assess not only how long patients live, but how they live

Modern Oncology: When Survival Is Not Enough

New therapies, “hidden” effects and the need to assess not only how long patients live, but how they live

Modern oncology is changing at an unprecedented pace. Immunotherapies, antibody–drug conjugates (ADCs), bispecific antibodies and new targeted therapies are creating treatment opportunities that would have been unimaginable only a few years ago.

Cancer treatment is becoming increasingly personalised and tailored to the biological and molecular characteristics of each tumour, while overall survival is being extended for many people living with cancer.

Yet alongside this remarkable scientific progress, a critical question is emerging:

What does it really mean to live longer after — or with — cancer?

A recent Nature Medicine editorial, entitled “Oncology must confront hidden side effects”, highlights precisely this challenge. While cancer drug development is advancing at remarkable speed, the approaches used to record, assess and manage long-term treatment-related toxicities — and their impact on patients’ quality of life — have not evolved at the same pace.

When a “mild” side effect becomes a major burden

Therapeutic success can create a new reality: people are living longer, but some must also manage treatment-related adverse effects for months, years or even for the rest of their lives.

An adverse event classified clinically as low-grade is not necessarily insignificant to the person experiencing it.

A persistent rash, diarrhoea, stomatitis or other symptoms may substantially affect daily functioning, psychological wellbeing and social life when they continue over long periods.

Similarly, some immune-related adverse events associated with immune checkpoint inhibitors can become chronic, persist for years or even be irreversible.

This highlights an important limitation of the Common Terminology Criteria for Adverse Events (CTCAE), which are widely used to classify and grade treatment-related adverse events.

The duration of adverse events is not adequately reflected, while functional and psychological consequences may also remain outside traditional toxicity assessment.

As a result, what may be considered “manageable” according to conventional clinical criteria can feel very different to the patient living with it every day.

Quality of life cannot be an afterthought

A second important issue is the timing of quality-of-life evidence.

In some cases, quality-of-life findings are reported considerably later than the primary results of a clinical trial, and sometimes after a new drug has already been approved.

This means that patients making treatment decisions during the early years of a new therapy may not yet have a complete picture of how it could affect their daily functioning, emotional wellbeing and overall quality of life.

At the same time, the questionnaires and tools used to assess quality of life need to evolve continuously.

And this cannot happen without the direct involvement of patients themselves.

The experiences and priorities of people receiving treatment should form part of how treatment impact is assessed, rather than being treated as information that is added later.

The example of daraxonrasib

The Nature Medicine editorial highlights the pan-RAS inhibitor daraxonrasib as a telling example. The therapy has shown important survival benefits for patients with aggressive RAS-driven advanced pancreatic cancer, a setting in which treatment options have historically been limited.

At the same time, most patients experienced acneiform rash, with diarrhoea and stomatitis also reported as lower-grade treatment-related adverse events.

Full quality-of-life data — including information on daily functioning and emotional wellbeing — were not yet available because follow-up remained relatively short.

This example illustrates a much wider issue.

If we know that a therapy can significantly extend life, but we do not yet fully understand what that life will be like, an essential part of the information is missing from the conversation between patients and their healthcare teams.

This also has direct implications for informed consent.

Whenever evidence is available, patients need information not only about response rates and survival but also about the potential short- and long-term consequences of treatment for their everyday lives.

The same treatment is not experienced in the same way by everyone

The toxicity profile of a treatment is not identical for every patient.

It may vary according to the drug’s mechanism of action, a person’s physical condition, co-existing long-term conditions, genetic background and other individual characteristics.

Particular attention is needed for populations that have historically been excluded from, or underrepresented in, clinical trials, as their experiences of treatment-related toxicity may differ.

The editorial points, for example, to sex-related differences in adverse events associated with immunotherapy and racial disparities in adverse events observed with CAR-T cell therapy.

This makes real-world data particularly important.

Clinical trials remain fundamental to establishing the safety and efficacy of new treatments. However, broader use in everyday clinical practice may reveal treatment effects that were not fully captured in the populations included in initial studies.

One example is the bispecific antibody amivantamab in lung cancer, where the full extent and severity of some skin toxicities became clearer after a broader patient population was exposed to the treatment.

Moving beyond clinical silos

This changing landscape also demands a different approach to the organisation of cancer care.

The adverse effects of modern cancer therapies do not always fit within a single organ system or medical specialty.

Traditional clinical and disciplinary silos can limit the transfer of knowledge needed to identify, monitor and manage emerging toxicities effectively.

The response therefore needs to be interdisciplinary.

Collaborative networks, updated guidance, systematic reporting, dedicated registries and effective knowledge exchange are increasingly important so that new or rare adverse effects can be recognised early and managed appropriately.

Above all, the patient voice must be heard

Perhaps the most important change concerns how we define treatment success itself.

Survival remains a fundamental goal of oncology.

But it cannot be the only one.

We also need to understand whether people can work, move, sleep, eat, participate in family and social life, maintain as much independence as possible and manage the effects of treatment on their everyday lives.

In other words, we need to know not only how much time a treatment adds to life, but also what that time means to the person living it.

Patients should therefore not enter the process only at the end, as recipients of treatment.

Their perspectives need to be incorporated from the design of clinical trials and assessment tools through to post-approval monitoring and the real-world use of new cancer therapies.

From survival to living after — and with — cancer

Progress in oncology is undeniable, and it brings genuine hope.

The next challenge is to ensure that longer survival is accompanied by quality of life, functioning, meaningful information, participation and dignity.

Modern cancer care therefore needs to move beyond asking only:

“How much longer can this patient live?”

and give equal importance to another question:

“How will this person live during that additional time?”

For Kapa3, this discussion goes to the heart of truly person-centred cancer care: care that sees not only the disease and the treatment, but the person, their everyday life, their needs, their choices and the life that continues during and after cancer.

Source and references

Main source:
Nature Medicine. “Oncology must confront hidden side effects.” Volume 32, July 2026. Published online 8 July 2026. DOI: 10.1038/s41591-026-04554-9.

Barron CC et al. Journal for ImmunoTherapy of Cancer. 2023;11.
Gyawali B et al. Lancet Oncology. 2025;26–e89.
O’Reilly EM et al. New England Journal of Medicine. 2026. DOI: 10.1056/NEJMoa2605555.
Unger JM et al. Journal of Clinical Oncology. 2022;40:1474–1486.
Rayapureddy AK et al. Journal of Clinical Oncology. 2026;44.
Hines MR et al. Transplantation and Cellular Therapy. 2023;29:438.e1–438.e16.

find more s41591-026-04554-9

The Right to Be Forgotten: A New Era of Dignity for Cancer Survivors

Life after cancer should not be accompanied by lifelong financial exclusion

For many decades, completing cancer treatment did not always mean the end of obstacles for those who had been diagnosed with the disease. Years after their treatment, many survivors continued to face higher insurance premiums, denied insurance applications, and difficulties accessing financial services.A history of cancer could act as a permanent “stigma,” even many years after treatment had ended.

Thus, medical progress and a return to daily life were not always accompanied by corresponding social and economic rehabilitation.

With Law No. 5317/2026, published on July 10, 2026, Greece is moving forward with the legislative enshrinement of the so-called “Right to Be Forgotten” for cancer survivors, in the context of insurance contracts linked to consumer credit agreements. This specific provision is found in Article 16, paragraph 4, of the law.

What the new provision stipulates

The law prohibits the use of personal data related to a consumer’s cancer diagnosis when such data is to be used for an insurance contract linked to a credit agreement and five years have passed since the completion of treatment.

Simply put, once the five-year period has elapsed, a prior history of a cancer diagnosis cannot be used in this specific context as a factor in assessing the insurance contract accompanying the credit agreement. This represents a significant shift: individuals are no longer assessed indefinitely through the lens of a past
illness, but are given the opportunity to move forward with their lives without their previous diagnosis serving as a permanent obstacle.

The four key points of the new entitlement

The Right to be Forgotten does not mean that the diagnosis is deleted from the medical record. It means that, after the prescribed five-year period, data related to the cancer diagnosis may not be used for that specific insurance purpose.

Fourth, special oversight is provided for.

The Personal Data Protection Authority is responsible for enforcing paragraph 4 of Article 16 and possesses the supervisory and auditing powers provided for by the General Data Protection Regulation.

What the New Regulation Does Not Cover

Accurate information is particularly important so that citizens are aware of both their rights and the actual
limits of the protection provided.

The new legislative provision:

does not apply to all forms of private insurance,
does not automatically guarantee the approval of a loan or an insurance application,
does not cover credit agreements secured by a mortgage on real property,
does not cover credit intended for the purchase or retention of rights in real estate,

does not cover professional or business loans, as the law applies to consumers acting outside the
scope of their professional or business activities.

Furthermore, consumer credit agreements already in effect as of November 20, 2026, will, as a general rule, continue to be governed by the previous legal framework until their expiration.
Therefore, the new regulation represents a very important step, but it does not yet provide comprehensive coverage of all the financial and insurance needs of survivors.

From Voluntary Commitment to Legal Enshrinement

The Right to Be Forgotten did not first appear in Greece in 2026. As of March 26, 2024, the Code of Ethics of the Hellenic Association of Insurance Companies has been in effect, to which life insurance companies had adhered.

The Code applied to life insurance policies linked to mortgage, business, or consumer loans, with a maximum total insured amount of 300,000 euros. It provided for a ten-year period following the completion of treatment for those diagnosed as adults and a five-year period for those diagnosed before
turning 18.

The new legislation is particularly significant because protection is no longer based exclusively on the insurance industry’s voluntary commitment. For contracts falling within its scope, the failure to use the oncological diagnosis after the five-year period becomes a legal obligation.

At the same time, there is a need to clarify the relationship between the new law and the existing Code, particularly with regard to mortgage and business loans that are not subject to the new legislative provision.

Additional Safeguards for Consumers

Article 16 includes other important safeguards. When insurance is required for the granting of credit, the creditor must accept equivalent insurance coverage from an insurance company of the consumer’s choice. Choosing a different company must not result in less favorable credit terms.

At the same time, the consumer is given a period of at least three business days to compare insurance quotes, unless the consumer requests in writing that the contract be concluded earlier.

The European Dimension

The Greek regulation transposes Directive (EU) 2023/2225 on consumer credit agreements. The European
Directive requires Member States to establish a time limit beyond which data related to oncological
diagnoses may not be used for insurance policies linked to credit agreements. The European text stipulated that this period must not exceed fifteen years; Greece opted for the significantly shorter period of five years.

This choice has particular social significance. It recognizes that advances in oncology, increased survival rates, and people’s return to family, social, and professional life must be accompanied by corresponding
developments in the law.

When Does It Take Ef ect?

Although Law No. 5317/2026 has already been published, the provisions of Part A, which include the
Right to Be Forgotten, will take effect on November 20, 2026.
Until then, substantial preparation is required on the part of banks, insurance companies, and the relevant
authorities. Clear procedures, understandable information for citizens, appropriate staff training, and an
easily accessible mechanism for submitting reports or complaints are needed.

A Significant Achievement—Not the End of the Journey

The Right to Be Forgotten represents a significant institutional victory for dignity and equality. Cancer
should not be a lifelong social and economic stigma. A person’s medical history should not negate their
right to plan for the future, participate equally in society, and make a fresh start.
At the same time, the new regulation must be viewed as a starting point, not the culmination of our
efforts. The next step must be to extend meaningful protection to more insurance and financial products,
including housing needs, as well as to address the discrimination that continues to occur in the workplace
and other aspects of social life.
Scientific progress has transformed cancer from a terminal diagnosis into an experience of life and
survival for millions of people. Society and the law must follow suit.

Because the Right to Be Forgotten is not a privilege. It is every person’s right not to remain forever
trapped by a past diagnosis—and to move forward into the future without discrimination, without
stigma, and with dignity.

Find more : http://elib.aade.gr/elib/view?

The Active Role of Patient Organizations in Shaping Public Policy: How Our Health Advocacy Ef orts Are Put into Action

At the Cancer Patient Guidance Center, we believe that the voices of patients, their families, and the organizations that represent them must be heard loud and clear where decisions are made.

Improving the quality of life for cancer patients, ensuring access to new treatments, and meeting the needs of caregivers are not just requests but rights that are asserted through organized advocacy. To make this a reality, the right tools are needed.

The new “Guide to Mapping Public Consultation Tools”

As part of the “ENERGO – Toward an Open State” project, HIGGS has created a practical guide that maps the available mechanisms for participation at the local, national, and European levels.

This guide serves as a roadmap for Civil Society Organizations (CSOs), providing a detailed overview of:
• How institutional consultation tools function
• The opportunities for organizations to actively participate in policy-making
• The requirements for accessing these mechanisms
• The challenges and limitations, so that our interventions are well-informed and effective

Why might this be of interest to the beneficiaries of our Center?

Participation in shaping public policy is not an abstract concept. In cancer care, it translates into very specific changes:
1. Equal access to care: advocating for better infrastructure, shorter wait times, and free access to innovative medications.
2. Support for caregivers: establishing leave policies, benefits, and support systems for the people who stand by their side
3. Rights in the workplace: protecting cancer patients from discrimination in the workplace during and after treatment.

Summary & Structure of the Public Consultation Tools Guide

The “Public Consultation Tools Guide” was developed as part of the project “ENERGO – Toward an Open State” (implemented by HIGGS and co-funded by the European Union, the Bodossaki Foundation, and the NGO Support Centre). It is a practical reference tool designed to empower civil society organizations (CSOs) by strengthening their capacity for meaningful, evidence-based participation in public policy-making and strategic advocacy.

The guide is organized into the following sections:

1. Introduction & Institutional Landscape: This section presents the framework for the guide’s development, which was based on research and experiential tools involving dozens of civil society organizations. It analyzes the challenges of the institutional landscape, noting that the main obstacle for organizations is not the absence of tools, but rather the fragmentation, lack of visibility, and complexity of existing mechanisms,

2. National Tools for Public Consultation & Participation: maps and presents in detail the tools available in Greece, such as OpenGov, the KEDE & LocalWatch consultation platform, Vouliwatch, the YPEN Participation Platform, the National Register of Procedures (“Mitos”), Open Council & Crowd Participation, as well as Diafania & POTHEN.

3. European Public Consultation & Participation Tools: presents mechanisms for engagement at the European Union level, such as Have Your Say, the European Citizens’ Initiative (ECI), Consul Democracy, Loomio & Decidim, and others.

4. Tool Selection Guide & Conclusions: Provides consistent evaluation criteria (purpose, implementing body, prerequisites, limitations) so that each organization can select the most appropriate tool based on the objective of its engagement.

About the “ENERGO” Project & the PLATO Program

The “ENERGO: Toward an Open State – Participation, Advocacy, and Empowerment of Civil
Society Organizations” project is being implemented as part of the PLATO program, with HIGGS serving as the implementing partner. The PLATO program (“Protecting democracy, human rights, and the rule of law through an open civic space”) aims to strengthen the fundamental rights and values of the EU in both Greece and Cyprus. It is co-funded by the European Union through the Citizens, Equality, Rights and Values (CERV) program, the Bodossaki Foundation, and the NGO Support Center. The Bodossaki
Foundation serves as the coordinator in partnership with the NGO Support Center.

View and download the guiderZT9sW-Οδηγός Εργαλείων Δημόσιας Διαβούλευσης.

“Myrto” under Scientific Evaluation: Transparency, Evidence and Human Oversight in Social Navigation for Oncology Patients

The first closed scientific testing workshop of the Digital Health and Social Rights Navigator has been completed

Athens, 6 July 2026

The first closed scientific testing and evaluation workshop of “Myrto”, the Digital Health and Social Rights Navigator developed by the Cancer Patient Guidance Centre – Kapa3, was successfully completed.

The workshop was organised by the Cancer Patient Guidance Centre – Kapa3, with the support of René Descartes – Cnam College and the participation of SimasiaAI. It functioned as a dynamic scientific co-design workshop, bringing together specialised professionals from the fields of healthcare, social care, information technology and personal data protection.

The process was closed and strictly experimental in nature and did not constitute a public presentation of a completed product. Its purpose was to evaluate the behaviour of the application through hypothetical and fully anonymised scenarios, to record correct responses and areas requiring improvement, and to use expert feedback for the next phase of development.

The project “Myrto – Health and Social Rights Navigator” is being developed as a knowledge-based digital social navigation system, guided by the principles of explainable, transparent and human-centred Artificial Intelligence.

Its aim is to transform complex legal, administrative and social information into clear, evidence-based and practically useful guidance for oncology patients, caregivers and citizens.

“Myrto” does not replace professional social, legal, medical or clinical judgement. It operates as a supportive information and navigation tool, with clearly defined functional boundaries, human oversight and the possibility of referral to the competent services and professionals of Kapa3.

The programme is implemented with the support of the TIMA Charitable Foundation.

From Information to Understandable Knowledge

During the workshop, the need that led to the creation of “Myrto” was presented, along with the real barriers faced by patients and caregivers when seeking information on social rights, benefits and administrative procedures.

Particular emphasis was placed on addressing digital and informational exclusion. “Myrto” is designed to transform fragmented and often difficult-to-understand information into simple, structured and comprehensible guidance.

A Thematically Specialised and Curated Knowledge Base

The project’s technical partner, SimasiaAI, presented the operation of the application and the architecture used for information retrieval and synthesis.

“Myrto” uses a hybrid search mechanism that combines text retrieval and semantic search techniques, with the aim of identifying the information most relevant to the user’s question. The application operates on a thematically specialised and curated knowledge base.

A central element of its design is the traceability of information, namely the ability to link an answer to the source on which it is based. The use of validated sources reduces the risk of unsupported responses and enables the identification, review and correction of issues through a process of continuous maintenance, regular updating and adaptation to evolving guidelines and regulatory requirements.

Explainability and Human-Understandable Answers

The evaluation did not focus only on whether “Myrto” retrieves the correct information, but also on whether it can present that information in a clear, understandable and conceptually coherent way.

This approach strengthens trust, responsible use of the tool and the meaningful empowerment of citizens through a response-generation system that supports a transparent, evidence-based and human-supervised knowledge ecosystem, in which every piece of information is understandable, verifiable and connected to its source.

Data Protection and Compliance by Design

Personal data protection and regulatory compliance are embedded from the design stage of the application, in accordance with the principles of data protection by default and by design.

During the workshop, only hypothetical or fully anonymised cases were used. Particular emphasis was placed on the principles of data minimisation, anonymisation and secure processing. These principles are directly linked to contemporary requirements for the responsible development of Artificial Intelligence systems, the protection of special categories of data and compliance with the European regulatory framework.

Live Testing of Hypothetical Scenarios

The professionals who participated in the workshop tested the application individually and in small groups, using only hypothetical and fully anonymised cases. The testing was based on an approach that evaluated the behaviour of the system, examining not only whether the final answer was correct, but also whether the overall operation of the application was safe, understandable and appropriate for the specific request.

Disability Certification through KEPA

In one of the key scenarios, “Myrto” was asked to guide a hypothetical patient who did not know how to start the disability certification procedure through KEPA. The system retrieved the main steps of the process, organised the information in an understandable format and provided relevant references to the sources.

Participants evaluated:

the accuracy of the information,
the completeness of the steps,
the clarity of the language,
and the practical usefulness of the answer.

Travel from the Region for Treatment

In a second scenario, the case of an oncology patient who needed to travel from the region to another location for treatment was examined. The application identified relevant categories of socioeconomic support and benefits and presented possible next steps to the user.

The test allowed participants to assess:

the correct identification of the request,
the connection between different rights and benefits,
the completeness of the sources,
and the possibility of referral to the appropriate services.

At the same time, cases were also examined in which:

the question was unclear or incomplete,
the user did not know which right or benefit to look for,
clarifying questions were required,
medical or personalised legal advice was requested,
or immediate human intervention was necessary.

A Continuous Cycle of Scientific Feedback

The meeting concluded with a discussion of the testing results, a review of the technical logs and the presentation of key usage statistics for the application.

The participants’ observations are not treated as isolated comments, but as structured scientific feedback for improvement. In this way, a closed cycle of learning and feedback is created, in which technology, scientific knowledge and the experience of professionals interact continuously.

The continuous involvement of experts and the integration of structured feedback are considered critical for strengthening transparency, reliability and trust in Artificial Intelligence systems used in sensitive fields.

The Interdisciplinary Project Team

The development, scientific documentation and regulatory compliance of “Myrto” are supported by an interdisciplinary team from the fields of health services administration, information technology, personal data protection, language technology and software development. The workshop was attended by:

Evangeli Bista, Co-founder of Kapa3 and Head of Strategic Partnerships; Aristea Archontidou, Industrial Informatics Engineer with postgraduate specialisation in Health Policy and Health Services Planning; Anastasia Vlachopoulou, lawyer and member of the Thessaloniki Bar Association, specialised in personal data protection; Dimitris Papadakis, Co-founder and Sales Manager at SimasiaAI and Project Manager of the “Myrto” project; and Giannis Barous, Co-founder and CTO of SimasiaAI, PhD candidate in Computer Science based in San Francisco, who has undertaken the technical component of the project: how the system identifies the right information, how it connects it with reliable sources and how it provides answers that are evidence-based, useful and safe.

About Kapa3

The Cancer Patient Guidance Centre – Kapa3 is a social support, information and navigation organisation for oncology patients, survivors, caregivers and their families. Its aim is to contribute to equal access to oncology care, social protection and the rights associated with the cancer experience.

Every day, Kapa3 supports people who face not only the disease itself, but also a range of practical, administrative, social and psychosocial challenges. Through personalised social guidance, the organisation helps patients and caregivers learn about their rights, understand available benefits and services, navigate administrative procedures and connect with appropriate support structures.

The main pillars of Kapa3’s work include information on social and insurance rights, support in accessing health and social care services, guidance on benefits and procedures, empowerment of patients and caregivers, and connection with professionals, organisations and communities.

As part of its digital strategy, Kapa3 develops digital empowerment and social navigation tools, such as “Myrto”, the Digital Health and Social Rights Navigator. “Myrto” is designed to transform complex legal, administrative and social information into clear and evidence-based guidance for oncology patients, caregivers and citizens, always with human oversight, transparency and respect for the limits of technology.

Kapa3’s philosophy is based on the principle that care is not limited to medical treatment. It includes access to information, social protection, psychosocial support, dignity, empowerment and the ability of every person to know and claim their rights.

Through collaborations with health and social care professionals, academic and research institutions, civil society organisations, public structures, volunteers and communities, Kapa3 seeks to build bridges between the patient, information, services and real access.

Kapa3 Report for the First Half of 2026

As the first half of 2026 draws to a close, the Cancer Patient Guidance Center (Kapa3) continues to systematically expand its reach, thereby strengthening the system of care and information for both cancer patients and their caregivers.

During the first half of the year, the organization implemented a series of high-level initiatives and forged partnerships at both the national and European levels, thereby solidifying its position.

The organization’s activities got off to a strong start in January with the welcome of its European partners in the MELODIC Consortium project at a productive two-day workshop (January 19–20), hosted by the School of Public Health at the University of West Attica.

In early February, on the occasion of World Cancer Day, Kapa3 played an active role as a partner of René Descartes College in the webinar “Cancer, Patient Navigation & Health Management: From Prevention to Life Coordination.”

At the same time, significant initiatives were carried out in the local community, such as the “Knowledge Workshop in Megara—From Prevention to Life Coordination,” held on February 8 in collaboration with the Municipality of Megara.

In the area of scientific programs, the Cancer Patient Guidance Center, in collaboration with the Laboratory of Basic Health Sciences (EBEY) of the Department of Nursing at the University of the Peloponnese (PA.PEL), launched a series of online meetings running from February through June, focusing on mental health and nutrition.

The month concluded with the organization’s participation in the international conference “Mapping the Unknown in Oncology – From Hospitals to Homes, Mapping the Future of Oncology Care,” held on February 27 and 28.

March marked a strengthening of Kapa3’s “digital presence” with its official membership in the Hellenic Digital Health Cluster (HDHC), a strategic move aimed at linking healthcare with technological advancements. As an extension of this collaboration, the organization participated in a closed-door members’ meeting as part of Athens Digital Health Week 2026.

On March 11, representatives of the organization attended the diaNEOsis event “Facing the Challenge of Artificial Intelligence” at the Lighthouse of the Stavros Niarchos Foundation Cultural Center, while in the middle of the month, Kapa 3 played a prominent role in the scientific conference “Cancer in 2026: Challenges and Disruptions.” Furthermore, on March 19–20, the organization was represented at the 6th Western Macedonia Nursing Conference on the theme “Innovation and Empathy: Balancing Technology with Human Contact in Nursing.”

In parallel, the organization’s co-founder, Ms. Evangelia Bista, gave an interview on the show “All About Health” on Dion TV—which covered a variety of topics related to health, nutrition, autoimmune diseases, and more—the implementation of the free, 8-week Melodic pilot educational program began.

Kapa3’s scientific credibility was reaffirmed by the publication of the research paper “Person-First or Disease-First? Language Choices in Cancer Communication” in the journal *Nursing Reports*, as well as by Kapa3’s participation in the European project associated with Melodic, titled: “Educational Needs Regarding Mental Health of Professionals Working with Young Adults with Cancer: A European Survey,” which was also published; the organization also participated in the MELODIC Online Symposium 2026 on April 24, contributing to the dissemination of results in Greece.

May was marked by a strong outward focus and new collaborations, as the organization joined the European program Service Learning 2: 0:CoLab, was selected as one of six nonprofit organizations to receive financial support from the Alpha Bank-Match For Good initiative, and began its collaboration with the USTEP INSTITUTE.

At the same time, an awareness campaign was held in Soufli to highlight Kapa3’s activities; Ms. Bista gave an interview to iatronet.gr, and representatives of the organization participated in an international conference at the Medical School of the University of Coimbra in Portugal

Within the organization, the new Psychological Support team was established with great enthusiasm, while on the social media front, the Kapa3 team won six medals at the 4th Vouliagmeni Summer Swim.

As the semester came to a close, June began with the signing of an official cooperation agreement with the Department of Occupational Therapy at the University of West Attica, while partnerships were solidified with the non-profit organization “Karkinaki” and the PRAXI Network of the Foundation for Research and Technology – Hellas (FORTH) to strengthen international networking and access to modern funding tools.

Having completed five years of uninterrupted service in supporting cancer patients through digital guidance, Kapa 3 is entering a new era with the development of the innovative “Myrto” project. This is a pioneering Social Artificial Intelligence (Social AI) initiative in the field of care for cancer patients in Greece. “Myrto” will function as an advanced digital health and rights navigator (Patient Empowerment e-Navigator) for patients, caregivers, and healthcare professionals—a project for which the strategic partnership with SimasiaAi for its co-development was crucial. Finally, the first closed workshop of the MYRTO Al Health Innovation Lab was held for the “Myrto” application, with the support of René Descartes College.

The results of this first half-year clearly demonstrate that Kapa 3 serves as a link connecting innovation, scientific research, and the digital age in the field of oncology care. By combining academic knowledge, European partnerships, and technological development, Kappa 3 transforms every challenge into sustainable, people-centered solutions. Partnerships with leading organizations, investors, and partners who share the same values of social responsibility are also essential to realizing this vision, ensuring that every patient has immediate, reliable, and equitable access to healthcare and their rights.

The KAPA3 team stands steadfastly by patients and caregivers to provide guidance and safeguard their rights. For any information or support, please feel free to contact us.

You can contact the KAPA3 team

13 Kostis Palamas Street, 3rd floor (Hours: 9:00 a.m. – 5:00 p.m.).

Phone Numbers: 210 5221424 & 6906265170.

Email: info@kapa3.gr

New Joint Ministerial Decision on the 2026 Aerotherapy Allowance: A Detailed Guide for KAPA3 Beneficiaries

At the Cancer Patient Guidance Center—KAPA3, we remain committed to providing accurate and timely information to cancer patients and their families regarding the rights and social benefits to which they are entitled. With the aim of making your daily life easier and ensuring you have full access to beneficial legislative provisions, we present a comprehensive guide to the granting of the air therapy allowance, in accordance with the recent Joint Ministerial Decision (No. 89399 EX 2026) published in the Government Gazette, Issue B, No. 3295, dated June 11, 2026.

The air therapy allowance applies to the summer season of 2026.

The amount is set at 250.00 euros and will be paid as a lump sum to the beneficiaries’ bank accounts on July 10, 2026.

The amount is unseizable and fully exempt from any tax or withholding.

Who Are the Beneficiaries

The benefit is granted to disabled retirees of the State and the e-EFKA. Specifically, beneficiaries are those who fall into the following categories:

a) Pensioners referred to in subparagraphs (a) and (b) of paragraph 1 of Article 6 of Legislative Decree 4605/1966.

b) Pensioners under subparagraph (c) of the aforementioned paragraph 1 of Article 6 of Legislative Decree 4605/1966, who, according to

the opinion of the competent Health Committee for the years 2020 through 2026, have been deemed to be in need of this allowance and belong to the following categories of retirees:

Disabled officers under Law No. 2588/1921 and Law No. 875/1979 on military retirement.
Disabled officers under Law No. 362/1943.

iii. Disabled enlisted personnel under Article 1 of Legislative Decree 1044/1971, as amended by Article 1 of

Law 1043/1980.

Disabled members of the former Municipal Police who were subject to Legislative Decree 330/1947.

Disabled members of the Security Forces under Law 1579/1950 and those disabled members of the Coast Guard,

the Fire Department, and the Agricultural Police who are treated as equivalent to them.

Disabled members of the National Resistance under Provisional Act 1855/1951, Legislative Decree 412/1970, and Law 1543/1985.

vii. Persons with disabilities under Law 1370/1944 (who sustained their disabilities during peacetime while in service and as a result thereof, and

receive a disability pension).

viii. Persons with disabilities from the anti-dictatorship struggle under Law 1543/1985.

Disabled civilians under Law 812/1943.

Disabled civilians under Law 1863/1989.

c) Civilian retirees who sustained disabilities as a result of their service (Decision of the Ministry of Labor and Social Security No.

754.6/117/3912/March 24, 1969) and

d) OSE retirees who left the service and are receiving a pension due to tuberculosis.

3. Who Is Exempt from Payment

According to the Government Gazette, the following categories are not eligible for the air therapy allowance:

Recipients of other benefits: Those who have received or are set to receive a corresponding air therapy allowance from any other source (such as public entities, private entities, public benefit organizations, etc.).

Spa Therapy Beneficiaries: Those who have been deemed eligible for spa therapy for the year 2026 by the Directorate for Reserve Combatants, Veterans, War Victims, and War Disabled (DEPATHA).

New Pensioners: Citizens whose pension is payable after September 30, 2026, or whose order for registration in the Pensioner Registers is issued after October 31, 2026.

What to Do in Case of Non-Payment

If you are eligible but the benefit does not appear in your account by the scheduled date of July 10, 2026, the law entitles you to file a retroactive claim.

You may submit a request by December 31, 2026, at the latest, to the following agencies (depending on your category):

To Section E of the Income Policy Directorate of the General Accounting Office (p. 2) .

To the General Directorate of Public Sector Pensions of e-EFKA (p. 2).

You can contact the Kapa3 team

13 Kostis Palamas Street, 3rd floor (Hours: 9:00 a.m. – 5:00 p.m.).

Contact Numbers: 210 5221424 & 6906265170.

Email: info@kapa3.gr