Kapa3 on European Carers Day: Supporting Carers Is an Essential Part of Supporting Patients

The often unseen burden on families, evidence from Kapa3’s everyday practice, and the need for patient navigation, psychosocial support and equitable access to cancer care.

Athens, 6 October 2026

Kapa3 – Cancer Guidance Centre participated in an event organised by the Greek Carers Network EPIONI to mark European Carers Day, held on Tuesday, 6 October 2026, at the European Parliament Liaison Office in Greece, Athens.

In their presentation entitled “The Caregiver as a Key Pillar of Support for Cancer Patients: The Greek Reality,”Evangeli Bista, Co-founder of Kapa3, and Marilia Barka, Psychology student and Kapa3 volunteer, highlighted the multifaceted role of informal carers, the challenges they face and the importance of recognising their contribution to cancer care.

The presentation brought together scientific knowledge and practice-based evidence from Kapa3’s daily operations, highlighting the fact that effective support for people affected by cancer must extend beyond medical treatment.

Cancer care does not end at the hospital. It continues at home, at work, within the family and throughout everyday life.

Informal Carers: The Invisible Coordinators of Cancer Care

Behind many cancer journeys is someone who coordinates appointments, searches for reliable information, manages administrative procedures, organises transportation and provides emotional support.

Informal carers, often family members or people from the patient’s immediate social environment, frequently become the invisible coordinators of care.

Their contribution, however, comes with significant practical, social, financial and psychological demands.

Balancing employment with caregiving responsibilities, losing personal time, facing additional expenses and coping with uncertainty about the course of the disease can substantially affect carers’ quality of life.

These challenges do not necessarily disappear when treatment ends.

Recovery, rehabilitation, returning to everyday routines and adapting to changing family roles may create additional responsibilities and emotional pressures.

Supporting carers is not simply an additional social service. It is an essential component of continuity and quality of care.

What Kapa3’s Data Reveal

Kapa3’s everyday experience demonstrates the important role carers play in seeking information and support.

According to the organisation’s internal telephone activity records, 1,251 telephone contacts were recorded between 27 January and 30 July 2026.

These included 614 incoming and 637 outgoing contacts, with 184 incoming contacts initiated by carers.

In addition, Kapa3’s service records for 2024–2025 indicate that 50.7% of first contacts were initiated by carers. Within the corresponding records, 89.1% of carers who contacted the organisation were first-degree relatives.

These figures describe activity recorded within Kapa3’s services. They should not be interpreted as nationally representative statistics on informal caregiving in Greece.

Nevertheless, they highlight an important reality: the first person seeking guidance is often not the patient, but someone supporting them.

Common requests concern administrative guidance, social rights and benefits, disability certification procedures, employment-related support and access to psychological services.

The challenge is not always a lack of information.

Information is often fragmented across multiple institutions, subject to changing procedures and difficult to translate into practical next steps.

Patients and carers need more than information. They need reliable guidance that helps them take action.

The Psychological Burden of Caregiving Is Not Always Visible

Caregiver burden extends well beyond physical fatigue.

It may involve psychological distress, financial insecurity, changing family dynamics, social isolation and profound existential concerns.

Carers are often expected to remain available and resilient even while experiencing fear, sadness, uncertainty or exhaustion themselves.

Some may hesitate to express their needs, believing that all attention should remain focused on the person living with cancer.

Recognising caregiver distress and ensuring access to psychosocial care, counselling and practical assistance are therefore essential elements of comprehensive cancer support.

Caring for carers is part of caring for patients.

Patient Navigation: Connecting Needs with Support

At Kapa3, patient and social navigation involves much more than answering individual questions.

It is a structured process of identifying needs, recording and prioritising requests, exploring solutions, referring people to appropriate services and reviewing the support provided.

This approach seeks to connect patients and carers with healthcare services, social protection systems and relevant professionals.

Social work and interdisciplinary collaboration are particularly important in addressing practical, financial, administrative and psychological needs in a coordinated way.

Kapa3’s experience highlights that meaningful access to care depends not only on the availability of services, but also on people’s ability to understand, reach and effectively use them.

MYRTO: Digital Innovation Strengthening Human Guidance

The presentation also introduced MYRTO – Kapa3’s AI-Supported Digital Social Navigator, designed to facilitate access to evidence-informed information on social rights, benefits and support services.

MYRTO is being developed in technological collaboration with SimasiaAI, with the valuable support of the TIMA Charitable Foundation.

Using documented information sources, plain language and clarifying questions, the application aims to make complex information easier to access and understand.

Human oversight and referral to appropriate support professionals remain essential aspects of its approach.

According to an administrative dashboard snapshot dated 19 September 2026, MYRTO had recorded 2,220 sessions. This figure refers to application sessions, not necessarily to unique users or beneficiaries.

Topics raised through the application included healthcare benefits, medicines and treatment, disability certification, patient and caregiver rights, employment matters and social protection.

At Kapa3, the value of Artificial Intelligence lies in its ability to strengthen human support rather than replace it.

Technology can organise information. Human relationships make care possible.

Employment and Caregiving: The Need for Institutional Recognition

Supporting someone with cancer frequently affects carers’ professional lives.

Attending appointments, responding to unexpected needs and managing everyday responsibilities require time, flexibility and appropriate employment arrangements.

Accessible information on existing rights and leave entitlements, flexible working arrangements where applicable, return-to-work support and greater awareness among employers and human resources departments can help reduce the burden.

Recognising caregiving responsibilities and preventing workplace exclusion should be part of a broader approach to social protection and inclusive employment.

Five Priorities for More Equitable Cancer Care

Kapa3’s presentation outlined five priorities:

  1. Recognition of informal carers as essential partners in care and social policy.
  2. Integration of patient navigation as a consistent component of organised cancer care.
  3. Access to psychosocial support from diagnosis and throughout the cancer journey.
  4. Responsible digital inclusion, based on plain language, accessibility, transparency and human oversight.
  5. Collaboration and sustainable funding, involving public authorities, local government, healthcare professionals and civil society organisations.

These priorities reflect the need for a healthcare and social support system that recognises the interconnected needs of patients, survivors and carers.

From Recognition to Meaningful Support

Kapa3’s participation in the event organised by EPIONI provided another opportunity to highlight the needs of people who provide care every day, often without sufficient recognition or structured support.

Carers’ lived experiences, systematically documented service needs and scientific evidence can inform more responsive healthcare services and public policies.

For Kapa3, care must be understood as an ongoing process connecting people with reliable information, appropriate services, professionals and their communities.

No cancer journey without navigation.

No digital innovation without human connection.

Because care concerns not only the person living with cancer, but also those standing beside them.


Event Information

European Carers Day 2026

Date: 6 October 2026
Venue: European Parliament Liaison Office in Greece, 8 Vasilissis Amalias Avenue, Athens
Organiser: Greek Carers Network EPIONI

Event information:
https://epioni.gr/εκδήλωση-για-την-ευρωπαϊκή-ημέρα-φρον/

Kapa3 – Cancer Guidance Centre
https://www.kapa3.gr/

Explore MYRTO – Digital Social Navigator
https://kapa3-cag-rag-hybrid-deploy.onrender.com/

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.

 

June: Cancer Survivors Month

Survival is a victory — but care must continue

June is dedicated to people living with and beyond cancer. It is a month of recognition, hope and respect for every person who has faced a cancer diagnosis, completed treatment, continues treatment, or lives with cancer as a long-term condition.

Cancer survival is a major victory. However, for many people, it is not the end of the story. Life after cancer often brings a new reality: follow-up appointments, fear of recurrence, fatigue, emotional distress, changes in body image, work-related challenges, financial pressure, family adjustments and the need to rebuild everyday life with confidence and dignity.

Cancer Survivors Month reminds us that survivorship is not only about living longer. It is also about living better.

A cancer survivor is not only a person who has completed treatment and is disease-free. The term also includes people receiving maintenance treatment, people living with cancer as a chronic condition, and those who continue to experience the physical, emotional, social or economic consequences of the disease and its treatment.

In recent years, advances in early diagnosis, targeted therapies, immunotherapy, surgery, radiotherapy and supportive care have increased the number of people living many years after a cancer diagnosis. This is a major achievement for medicine, research and public health. At the same time, it creates a new responsibility: to ensure that survivorship care is organised, person-centred and accessible to all.

For many survivors, the end of active treatment is a moment of relief and gratitude. Yet it may also bring uncertainty. Some people feel that everyone around them expects them to “go back to normal”, while they are still trying to understand what has changed in their body, their emotions, their relationships and their daily life.

The fear of recurrence, anxiety before follow-up tests, persistent fatigue, pain, cognitive difficulties, changes in sexuality, emotional vulnerability and social isolation are real experiences for many people after cancer. These needs should not be underestimated. Survivors need space to speak, reliable information, access to professional support when needed, and connection with communities and organisations that understand their journey.

Long-term follow-up is also essential. Survivorship care should not focus only on recurrence. It should also include prevention, early recognition of late effects, management of treatment-related complications, support for mental health, healthy lifestyle guidance and personalised monitoring according to each person’s cancer type, treatment history, age and individual risk factors.

The message is not fear. The message is awareness, prevention and continuity of care.

Life after cancer is also about rights. It is about returning to work, accessing social benefits, understanding available services, managing financial toxicity, supporting caregivers, protecting dignity and ensuring equal access to care. Survivorship must be seen as a social, psychological and practical issue — not only a medical one.

At Kapa3, we see every day that cancer does not always end with the last treatment. It continues in the questions people ask about their rights, their next steps, their follow-up, their access to benefits, psychological support, work, family life and social reintegration.

This is why people living with and beyond cancer need holistic support. They need information, guidance, psychosocial care, access to rights and services, empowerment and continuity of care. No one should feel alone after treatment. No one should be left to navigate bureaucracy, uncertainty or lack of information without support.

Cancer Survivors Month invites us to change the way we talk about survival. We should not ask only: “Did the person survive cancer?” We should also ask:

Are they living with quality of life?
Do they have access to the care they need?
Do they know their rights?
Do they receive psychological and social support?
Can they return to work and daily life with dignity?
Is there a follow-up plan?
Is there someone to guide them when they do not know where to turn?

Cancer survival is a victory. But the real challenge is to turn this victory into a life with quality, safety, rights, support and hope.

At Kapa3, we continue to stand beside every person living with and beyond cancer. Through information, guidance, empowerment and human-centred support, we believe that care does not stop at treatment.

It continues in life.

Results from the First Phase of the Knowledge Mapping of Members of the Civil Society Alliance, Greece

The first phase of the survey on the current state of knowledge and use of technological tools by members of the Civil Society Alliance, Greece, was successfully completed. Its aim was to identify the strengths, challenges, and needs of the organizations, in order to support their further development and process improvement.

The contribution of the Cancer Guidance Centre – KAPA3, particularly through the collection and analysis of data by Mr. Konstantinos Tzanas, Statistical Analyst, MSc, was significant. This involvement ensured the quality, completeness, and reliability of the results, providing a comprehensive picture of the current situation.

Key Findings
  • Organizations that invest in digital maturity demonstrate better financial management and overall organizational performance.

  • 2024 inputs/budgets are the most decisive factor for organizational maturity. Medium-sized organizations (€250,000 – €600,000) show the best balance of resources and effectiveness.

  • Significant gaps exist in financial sustainability, particularly in revenue generation and grant acquisition, regardless of size.

  • Respondents’ gender does not affect evaluations, while organizational position mainly influences assessments on financial matters.

Organization Clusters
  • Underperforming in management – Emerging (3 organizations, 9%)
    Low maturity, need to develop basic governance and financial management.

  • Digitally Mature Organizations (13 organizations, 39%)
    High digital skills, good KPI handling, need to strengthen fundraising and strategic financing.

  • Organizations with Limited Resources (8 organizations, 24%)
    Focus on grants, weaknesses in financial management, need for basic digital tools and KPIs.

  • High-Maturity Organizations (9 organizations, 27%)
    Excellent governance and financial management, strong points in legal compliance and budgeting, best practices accessible for mentoring.

Strategic Recommendations
  • Strengthen basic governance and financial management for emerging organizations.

  • Leverage digital skills to enhance fundraising in digitally mature organizations.

  • Invest in essential financial management tools and KPIs for organizations with limited resources.

  • Maintain excellence and exchange best practices for high-maturity organizations.

Text/adaptation: Ifiyenia Anastasiou for Kapa3