Dissemination Report - focusing on highly visible project events

About this deliverable

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Project consortium

1. Executive Summary

The main aim of work package 6 (WP6) 'Communication, Dissemination & Sustainability' was to widely communicate & disseminate the project results and plan for sustainability of the network and Platform post-project. Deliverable D6.2 'Dissemination Report – focusing on highly visible project events' details the dissemination activities carried out during the project, with a focus on the 2-day Networking Event, three 1-day Policy Events in Lithuania, Austria and Spain, three Regional Events in Balkan countries and the Closing Event, as well as activities during the 10-month extension of the project (including the final Ambassador Event, Equity, Diversity & Inclusion (EDI) in Cancer Care Stakeholder Forum and High Level Inclusivity Roundtable on EDI).

Project activities and events built on the significant experience of CCI Europe and YCE in disseminating within the community of children, adolescents and young adults (CAYA) living with and after cancer and other related stakeholder communities. The activities described within this report took place over the project's lifespan and extended beyond EU Member States. The aim of the dissemination activities was to promote the results of the Network across the three main project themes (Quality of Life, Adolescent and Young Adult (AYA) Care and EDI [1] to ensure that the expected impacts of the project were achieved, as well as to set the stage for future activities to continue advancing the targeted actions and initiatives necessary to benefit the quality of life of young cancer survivors.

2. Introduction & Background

The EU-CAYAS-NET project has established a European Network of Youth Cancer Survivors and created a Knowledge Centre and interactive Platform (https://beatcancer.eu/) to foster social networking, peer support, and knowledge exchange among childhood, adolescent, and young adults (CAYA) living with and beyond cancer. The project focused on three key themes: (1) improving the quality of life of people living with and beyond cancer, (2) enhancing care for AYA with and beyond cancer, and (3) promoting EDI throughout the cancer treatment and survivorship trajectory. This report describes the dissemination activities carried out during the project to promote the results of the Network across these three main project themes (WPs 3 – 5), in particular through Highly visible project events carried out under WP6.

As they focused on project results, dissemination activities relied on the outputs of WP3 (Quality of Life), WP4 (AYA Care) and WP5 (EDI), such as White Papers, Position Papers, guidelines and more. Many different channels were used to reach as wide a range of stakeholder representatives as possible, including social media campaigns (WP6), sharing of content and promotion of events on the Platform (WP2), webinars and short videos (WP2, with content from WPs 3 – 5) and in-person events (WPs 3 – 6).

Work described in this report demonstrates how the Network has achieved the project objective to widely communicate and disseminate project results. Specific metrics under this objective, described in the Grant Agreement, [2] include:

3. Approach

Activities reported here involved the participation of all Beneficiaries, with further support from Associated Partners (APs) to amplify key messages of the project. Dissemination planning and reporting was a core part of the WP6 update at monthly meetings with all Beneficiaries, three-monthly meetings with all Beneficiaries and APs and twice-yearly plenary meetings, as well as at regular meetings of the WP6 team. Dissemination activities were collected on an on-going basis using an online register, available to all Beneficiaries and Associated Partners. This register was used to update the Dissemination module on the portal, which was included in the final Periodic Reports to the funder.

4. Results

In the following sections, an overview of all activities is given (from Task 6.4), with a detailed description of the Highly visible network events (from Task 6.5). For information, communication activities (Task 6.3) are also presented (Annex 1).

4.1 Highly Visible Network Events

4.1.1 2-Day Networking Event – Vienna

In M15 (24 – 25 November 2023), the 2-Day Networking Event for Ambassadors (including Guideline Workshop) was held in Vienna. [4] The interest in this event was very high and in the end 62 participants from all over Europe took part, including BEN participants and a guest speaker. 35 senior Ambassadors and 17 new Ambassadors participated in the 2-Day Networking Event (i.e. Ambassador Training 2 and Guideline Workshop). 4 Ambassadors were from Austria, 1 from Belgium, 2 from Bosnia and Herzegovina, 1 from Bulgaria, 2 from Croatia, 1 from Czechia, 1 from Denmark, 1 from Finland, 4 from Germany, 2 from Greece, 3 from Ireland, 2 from Israel, 1 from Latvia, 3 from Lithuania, 2 from Luxembourg, 1 from Montenegro, 4 from the Netherlands, 2 from North Macedonia, 2 from Norway, 2 from Poland, 4 from Portugal, 2 from Romania, 1 from Serbia, 1 from Slovakia, 1 from Sweden, 1 from Ukraine, 1 from the UK. This covered 19 EU Member states and 8 non-EU countries.

The focus of this event was on equipping the Ambassadors with the skills they need to become strong and independent patient advocates. The agenda covered: an introduction to the European Network of Youth Cancer Survivors and a deep dive into the Network's advocacy topics (networking in the network, existing patient advocacy training, patient advocacy marketplace (via poster presentations), guideline workshop, peer support and EU-CAYAS-NET ambassadorship). In addition, a presentation and workshop were given by Maria Dutarte as a representative of the European Patients' Academy (EUPATI, https://eupati.eu/). Participants from non-EU member states also showed a particularly high level of interest, as survivorship care is often poor or non-existent in their countries.

The agenda is provided in Appendix 1.

This event was also accompanied by a media campaign, including a press release. [5]

The majority of participants rated their satisfaction between 4.5 and 5 (=maximum). More than a third were participating in such an event for the first time. The rest were participating for the second time. The presentations were rated as good to very good. The same applies to the materials provided and the group activities. The poster session in which participants presented their (national) survivor projects was particularly popular. 80 to 90% of participants would recommend such an event to their peers. Almost all participants said the event met or exceeded expectations. When asked what could be improved, two participants said that there was too much information and that they were so overwhelmed by it so that they had difficulty taking home the core message.

4.1.2 Policy Events - Austria, Lithuania, Spain

Austria

The Austrian Policy Event was held at Albert Hall in Vienna (28 Jun 2024). The Symposium focused on challenges related to mental health and psychosocial care after cancer during childhood, adolescence and young adulthood, and highlighted key outcomes of EU-CAYAS-NET to tackle these challenges in healthcare systems. The event featured speeches, messages, and round table discussions from leading experts in pediatric oncology, mental health, and advocacy, as well as national politicians and representatives of the European Commission. Prominent figures from the medical, political, and non-profit sectors signed the Vienna Declaration 'Improving the mental and psychosocial health of youth cancer survivors'. [6] The declaration emphasises the importance of improving mental and psychosocial health after cancer at a young age and proposes a set of actions to reach the goal of better care.

The event was attended by a multidisciplinary group of approx. 50 national and international stakeholders from all areas, who found the event very informative and unanimously agreed that they wanted to continue to be kept informed about the project.

After the Austrian Policy Event, a 1-day DACHL Workshop on patient advocacy was organised by CCI Europe for German-speaking patient advocates. The workshop had 14 participants and 4 guest speakers. It was held in German and contained: i) Science Communication, Public Relations (PR) and Marketing training (Guest speakers). ii) Patient Advocacy and Art (Guest Speakers), iii) Train your skills related to reasoning and awareness (CCI Europe), iv) event management and patient advocacy (CCI Europe). The feedback was overall very good and the participants agreed that taking part had been worthwhile and that they would like to stay in touch.

Lithuania

The Policy Event 'Transition of Care from Pediatric to Adults' took place 27 May in Vilnius, Lithuania. [7] The event, co-organised by POLA and the EU-CAYAS-NET project, focused on improving the transition of care for young cancer survivors from pediatric to adult healthcare. It brought together key stakeholders, including policymakers, healthcare professionals, patient advocates, and young people living with and beyond cancer themselves to discuss best practices, and government initiatives, and develop action plans for a smoother transition for young cancer survivors. The event was attended by 27 participants: 15 from Patient Organisations, 2 policymakers, 8 healthcare professionals, and 2 from other categories.

The event kicked off with opening remarks from Monika Ošmianskienė, the Chairman of the Commission for People with Disabilities of the Parliament of Lithuania. There were then presentations on the EU-CAYAS-NET project, Europe's Beating Cancer Plan, and government initiatives related to young cancer survivors, followed by expert insights on current practices, best practices for transition care, and preliminary recommendations for improvement. Next up was a panel discussion featuring diverse perspectives from healthcare professionals, patient representatives, and young cancer survivors, followed by a collaborative discussion on action points and next steps for enhancing the transition experience in Europe. At the end of the meeting, the Vilnius Declaration on Transition from Pediatric to Adult Cancer Care [8] was signed, outlining a commitment to improving the transition of care.

The agenda is available in Appendix 2.

The event was live streamed live and a recording is also available. [9]

Spain

On October 22, 2024, the Spanish Policy Event within the EU-CAYAS-NET project was co-organised by Sant Joan de Déu (FSJD), bringing together around 47 participants, including 15 patient representatives and patient organisations, 28 healthcare professionals (doctors and psychologists), and social workers, 3 policy makers and 1 participant from innovation/industry. The discussions focused on the long-term consequences of cancer survivorship and the need for lifelong follow-up care. The event also emphasized the importance of incorporating LTFU care into national cancer control plans, securing sufficient funding, and training healthcare professionals to deliver high-quality survivorship care.

The event concluded with the signing of the Barcelona Declaration, [10] a commitment to advocating for policy changes that ensure equal access to long-term follow-up care across Europe. This declaration will be submitted to the European Commission, aiming to promote structural and political action to enhance the quality of life for young cancer survivors, alleviate the burden on healthcare systems, and facilitate more effective societal reintegration.

From feedback to the organisers, the event was considered very successful and encouraging at the national level, and there is a willingness to continue communication and cooperation.

The agenda is provided in Appendix 3.

4.1.3 Regional Events

Bosnia

The first of the three regional events, Regional Young Cancer Survivors Convention, took place in Sarajevo, Bosnia from 08 – 12 Aug 2023 (M12) of the project, with 49 participants in attendance including survivors from Bosnia (22 participants), Serbia (8 participants), Montenegro (4 participants), Slovenia (1 participant), Croatia (7 participants) and Macedonia (4 participants).

Hosted by AP 'Heart for Children' with support from EU-CAYAS-NET, the convention included educational and social activities with a focus on raising awareness about late effects of treatment and establishing a system for monitoring late effects. 'Heart for Children' hosts this regional convention annually in one of the countries of the former Yugoslavia. The opening of the convention was attended by the Prime Minister of the Sarajevo Canton Nihad Uk, as well as the Director of the Association 'Heart for Children' Fikret Kubat, Board Member of Childhood Cancer International Europe Lejla Kamerić and EU-CAYAS-NET network representative Arnela Kamerić.

The agenda is provided in Appendix 4.

Four EU-CAYAS-NET Ambassadors attended the event to share their experiences with the Network.

The event was promoted on the communication and dissemination channels of the Network, as well as in national media. [11]

Bratislava

From 13 - 15 June 2024, a Regional Event for Young Cancer Survivors was hosted in Bratislava as part of the EU-CAYAS-NET project. The event brought together 35 participants from several countries, including Slovakia (10 participants), Czech Republic (8 participants), Hungary (6 participants), Austria (6 participants), and Poland (5 participants). The event was hosted by Associated Partners from the region.

Over three days, the event featured interactive workshops, survivor-led discussions, and a cross-border exchange of experiences. Key themes included barriers to psychosocial care, navigating the health system after cancer treatment, and inclusive survivor support across Central Europe. A highlight of the programme was a collaborative session on peer mentorship models, where participants from different countries presented grassroots initiatives and discussed how to adapt them within their local healthcare systems. The event also served as a platform to recruit and empower new youth Ambassadors for the EU-CAYAS-NET network in underrepresented countries.

Zagreb

From 07 - 09 June 2024, the 11th Regional Convention of Young Cancer Survivors was co-hosted by AP Krijesnica with CCI Europe as part of EU-CAYAS-NET under the theme "Zagreb Calls You!". The event gathered over 50 participants, including CAYA cancer survivors, from youth groups across Croatia (15 participants), Bosnia and Herzegovina (15 participants), Serbia (12 participants), Montenegro (5 participants), and North Macedonia (4 participants).

Over the course of three days, a series of workshops, discussions, and a concluding panel discussion were held. The convention highlighted shared challenges faced by young survivors across the region, with two key areas identified as priorities for further action:

1. Transition from Pediatric to Adult Care. The transition from pediatric to adult care remains a significant challenge, often leaving young survivors without adequate support. Many participants reported that they do not attend specialist follow-ups or are not even referred for them. Peer discussions emerged as an essential resource, enabling young survivors to guide one another in seeking necessary specialist examinations crucial for timely medical interventions and better long-term health outcomes.
2. Establishing a System for Monitoring Late Effects of Treatment. The need for a structured follow-up system to monitor the late effects of cancer treatment was strongly emphasized. Several participants shared their experiences of being treated by doctors unfamiliar with these late effects, leading to delays in diagnosing new health conditions, which then progress and become more difficult to manage. Additionally, mental health and fertility were recognized as critical topics requiring increased awareness and research.

These concerns continue to be central to young cancer survivors, highlighting the need for comprehensive, survivor-centered approaches in healthcare policies across the region.

Special thanks go to Prof. Dr. Jelena Roganović and Assoc. Prof. Dr. Lorna Zadravec Zaletel, whose contributions to the panel discussion provided valuable insights into their professional dedication to addressing late effects of cancer treatment. Their ongoing efforts to improve survivor care and establish structured follow-up monitoring across the region remain instrumental.

Appreciation is extended to all participants of the convention for dedicating their time, sharing their experiences, and fostering mutual support within the survivor community. Their voices play a crucial role in shaping future advocacy efforts and improving the quality of life for young cancer survivors across the region.

Participant feedback was positive with 58% rating the event at 5/5. Detailed evaluation feedback is in Appendix 5.

4.1.4 Closing Event

From 01 - 04 August 2024, YCE hosted the 4-day Closing Event of the EU-CAYAS-NET project in Cluj-Napoca, Romania. The event welcomed 180 participants (168 in-person and 12 online for the General Assembly) from 31 countries, including EU and non-EU members. Participants came from Romania (60 participants), Lithuania (12 participants), the Netherlands (12 participants), Poland (9 participants), Austria (9 participants), Ireland (8 participants), Portugal (6 participants), Hungary (6 participants), Spain (5 participants), Ukraine (5 participants), Belgium (5 participants), Croatia (4 participants), Greece (4 participants), Bulgaria (4 participants), Finland (4 participants), Slovenia (3 participants), the UK (3 participants), Serbia (3 participants), Italy (3 participants), Bosnia and Herzegovina (2 participants), North Macedonia (2 participants), Germany (2 participants), and individual participants from Moldova, France, Sweden, Armenia, Brazil, Canada, Czech Republic, the Philippines, and Slovakia.

The Closing Event marked the culmination of nearly three years of collaborative work under EU-CAYAS-NET and was hosted by Youth Cancer Europe. Over the course of four days, the programme included:

• The Final General Assembly Meeting, where all beneficiaries and associated partners reviewed the project's milestones and agreed on future collaboration and sustainability steps.
• Workshops and co-creation sessions, such as the "Sustainability Strategy Workshop" and thematic roundtables on peer support, education & career pathways, and equity in survivorship.
• Interactive Ambassador activities, where youth Ambassadors presented national and local achievements, led networking exercises, and took part in planning future community actions.
• A dedicated session on the future of the Platform and Discord community, with technical training and brainstorming on new content and outreach methods.
• Creative sessions, including storytelling, digital advocacy, and public speaking, aimed at empowering young survivors to amplify their voices in national and European-level policymaking.
• Social and cultural activities to build connection and community, including a welcome dinner, guided city tour, and an open mic night featuring music, poetry, and survivor stories.

The agenda is provided in Appendix 6.

The event was a celebration of resilience, advocacy, and solidarity, and provided a strong launchpad for the next phase of the European Network of Youth Cancer Survivors.

4.2 Summary of Dissemination Activities & Key Outputs on the Platform

A summary of all dissemination activities is provided in Appendix 7.

In addition to these dissemination activities, key outputs of the project under each theme, as summarised below, have been posted to the Platform. [12]

4.2.1 WP3

White Paper

The 'Optimising Quality of Life after Youth Cancer' White Paper [13] summarizes actionable recommendations from WP3 'Quality of Life', addressing mental health, education & career support, transition and follow-up care gaps across Europe.

Transition Guideline

The guideline on transition from paediatric to adult care has been accepted for publication in the peer-reviewed journal The Lancet Oncology. Once published in The Lancet Oncology, recommendations from the paper will be shared as a resource on the Platform. The guideline has been disseminated through a poster presentation and a panel moderation related to Transition at the International Symposium on Late Complications after Childhood Cancer (ISLCCC, 19–21 June 2025). The guidelines were also disseminated during the 30th PanCare meeting (Sep 2024), in the panel session 'Reducing inequalities and improving quality of life of cancer patients and survivors' at the World Cancer Day 2025: HaDEA project showcase 'Fostering synergies to beat cancer: The impact of EU-funded projects' (Feb 2025) and through a presentation at the Pediatric Cardio-Oncology Conference in Cincinnati (07–09 Nov 2024). A one-page summary of the recommendations was developed to provide an overview at a glance, with translations to German, Spanish, French, Serbo-Croatian, Italian, Lithuanian, Dutch and Romanian. [14]

Education and Career Materials from around Europe

The education and career support materials from around Europe that were identified during the project have been posted to the Platform as an interactive map.

Mental Health and Psychosocial Care

'Recommendations for Mental Health & Psychosocial Care after CAYA cancer - Standard, not luxury' are available via the Platform, [15] with translations to German, Spanish, French, Serbo-Croatian, Italian, Lithuanian, Dutch and Romanian. [16] Pocket Cards for Mental Health Awareness and Guidance were created as a support material, and are also available in many languages. [17]

Train-the-Trainer concept for Healthcare Professionals on education & career support for survivors

The Train-the-Trainer concept was tested and evaluated at a workshop held in Vienna (12 - 13 Mar 2024) with 30 participants from 16 countries.

The finalised concept was then made available for download on the Platform. [18] Additionally, a corresponding manual was made available for download, which can be used to prepare for training delivery, as well as serves as a handbook for use during the training workshop. [19] The manual includes specific examples of group work or worksheets with corresponding tasks.

Late Effects and Long-Term Follow-Up (LTFU) Care

A European Map of LTFU care was developed to give an overview of the current situation in Europe, along with a form to submit updates as the landscape of available care is dynamic. [20] 'Recommendations for LTFU care to be seen as the final step of successful cancer treatment' are available on the Platform. [21] A one-page roadmap was developed to support advocacy for better LTFU care, with translations to German, Spanish, French, Serbo-Croatian, Italian, Lithuanian, Dutch and Romanian. [22] 'From Experience to Action: A Guide to Talking with Survivors About Late Effects' was also created for healthcare professionals and posted to the Platform. [23]

4.2.2 WP4

Report on Findings of the AYA Care Peer Visits

A report on the findings from the AYA Care Peer Visits entitled 'Levelling Up AYA Cancer Care: Insights from Innovative Peer Visits Across Europe' was disseminated during EU-CAYAS-NET meetings, shared with Network Ambassadors, and made accessible on the Platform [24] and Youth Cancer Europe's website. [25] Results from this report also fed into the Position Paper on AYA Care.

Report on the AYA Round Table

A Report on the AYA Care Online Round Table 'Upscaling AYA Cancer Care: Towards Establishing Minimum Standards for Care for AYA Across Europe' was posted to the Platform, summarising the main key ideas discussed during the event. [26] Results from this report fed into the Position Paper on AYA Care.

'Specialist AYA Units Minimum Standards' Position Paper

The 'Recommendations and Implementation Roadmap for Minimum Standards of Specialist AYA Cancer Care Units' is available on the Platform. [27] Translations are available in German, French, Lithuanian, Spanish, Dutch, Italian, Serbo-Croatian, Romanian and Greek. [28] An AYA Care Pocket Card was also developed to promote the Position Paper and distributed at numerous events. [29]

4.2.3 WP5

EDI Results and Policy Recommendations

The EDI Policy Recommendations were launched at the 'Recommendations for Equitable, Diverse and Inclusive Cancer Care in Europe' Policy Event held at the European Parliament in Brussels (21 Mar 2024). [30] The recommendations (available in 12 European languages) are available on the Platform. [31] Results of the EDI work to better understand and address disparities in cancer care arising from mapping and outreach, online surveys and scooping reviews were presented at a webinar on 30 May 2024, where the EDI policy recommendations were also presented.

EDI Training Programme

The EDI Principles in Cancer Care Training Event (June 2024) launched the EDI Toolkit and training programme developed during the project. EDI training sessions were held 03-12 June 2024 in Cluj-Napoca for 19 researchers, 20 healthcare professionals and 20 patient advocates. The sessions utilised the EDI Training Toolkit available on the Platform, [32] with translations available in Serbo-Croatian, Dutch, German, Italian, French, Lithuanian and Spanish. [33] The 59 diverse participants reported increased EDI knowledge and confidence in post-training evaluations. Pocket Cards were also developed to support dissemination of the recommendations. [34]

5. Impact & Conclusion

The EU-CAYAS-NET project has successfully established a European Network of Youth Cancer Survivors and created a Knowledge Centre and interactive Platform (https://beatcancer.eu/) to foster social networking, peer support, and knowledge exchange among CAYA living with and beyond cancer. Dissemination activities have been carried out during the project to promote the results of the Network across these three main project themes (WPs 3 – 5), in particular through Highly visible project events carried out under WP6. The Network has achieved the project objective to widely communicate and disseminate project results, meeting all associated metrics.

6. Appendices

6.1 Appendix 1 - 2-Day Networking Event

EU-CAYAS-NET Ambassador Training 2, 24th & 25th Nov. 2023, Vienna – Programme outline

Day 1 – November 24th

• 09:30 – 09:50 – Welcome and expectations (Why are we here, what to expect) – CCI Europe, YCE
• 09:50 – 10:50 – session 1.1 – Introduction to the European Network of Youth Cancer Survivors and deep dive into our advocacy topics Part 1
  • Why did we start the project? (Katie Rizvi)
  • Deep dive to the advocacy topics addressed:
    • Mental Health & psychosocial care (Carina Schneider)
    • Education & Career Support (Anna Zettl)
    • Transition (Jaap den Hartogh)
• 10:50 – 11:00 – Coffee break 1
• 11:00 – 12:00 – session 1.2 – Introduction to the European Network of Youth Cancer Survivors and deep dive into our advocacy topics Part 2
  • Long Term Follow Up Care (Cherine Mathot)
  • AYA Care (Ana Totovina/Elena Arsenie-Constantinescu)
  • Equality, Diversity and Inclusion (Katie Rizvi)
• 12:00 – 13:30 – Lunch break
• 13:30 – 17:30 – session 2 – Guideline Workshop (Jikke Wams, Jaap den Hartogh, Renée Mulder, Elvira van Dalen)
  • 13:30 – 13:35: Aim of the workshop – How can patient values best be integrated into clinical guideline development?
  • 13:35 – 13:50: Introduction – What are clinical practice guidelines? What are the stages of guideline development? Example: Transition guideline
  • 13:50 – 14:50: Workshop in subgroups (10 pax) – Different phases of guideline development: Drafting/adapting clinical questions; Selection of evidence; Interpretation of conclusions of evidence; Translation of evidence to recommendation
  • 14:50 – 15:15: Coffee break 2
  • 15:15 – 15:30: Explanation – What methods are available to collect patient values? What is known and what is the benefit?
  • 15:30 – 15:45: Interview – Experiences of survivors in participating in guideline development
  • 15:45 – 16:30: Workshop in subgroups (10 pax) – Mind-mapping exercise: What stages? How to integrate patient values? Discussion on barriers and facilitators of participation
  • 16:30 – 16:45: Coffee Break 3
  • 16:45 – 17:30: Plenary Discussion – "How can patient values best be integrated into clinical guideline development", based on the conclusions of the subgroups
• 19:00 – 23:00 – Dinner and social programme at Soulkitchen Vienna (https://www.soulkitchenvienna.at/), Hintere Zollamtstrasse 2 B, 1030 Vienna

Day 2 – November 25th

• 09:00 – 09:15 – Arrival and registration
• 09:15 – 09:30 – Introduction to Day 2: Recap of feedback from 1st Ambassador event (Carina Schneider)
• 09:30 – 11:00 – session 1: Patient Advocacy
  • What is Patient Advocacy? (Sarunas Narbutas, Katie Rizvi), 09:30 – 09:45: Introduction to what patient advocacy is; Real life examples
  • Networking in the network project (Sarunas Narbutas)
  • Existing Patient Advocacy Trainings (Carina Schneider), 09:45 – 10:00: "There's no shortcut for gaining knowledge"
  • Patient Advocacy Market Place, 10:00 – 11:00: Poster presentations
• 11:00 – 11:15 – Coffee Break 1
• 11:15 – 12:30 – session 2 – EUPATI presentation and workshop (Maria Dutarte)
• 12:30 – 14:00 – Lunch break
• 14:00 – 15:00 – session 3.1 – Ambassadorship part 1 (Katie Rizvi & Senior Ambassadors): Examples of what Ambassadors have already done; Ambassadors hosting/instrumental in Peer Visits; Expectations from project Ambassadors
• 15:00 – 15:30 – session 3.2 – Ambassadorship part 2 (Hannah Gsell & Senior Ambassadors): Onboarding to the Network – How do I (as Ambassador) onboard new people to the network? Tools for onboarding new people
• 15:30 – 15:45 – Coffee Break
• 15:45 – 17:15 – session 4 – Peer Support (Carina Schneider & Senior Ambassadors): What is Peer Support? Different needs and ways to receive / give peer support (face-to-face / on-site peer support; peer support in EU-CAYAS-NET); Safeguarding measures; Draw on existing experience and expertise
• 17:15 – 17:30 – Wrap up and goodbye

Poster Presentation

As part of the Patient Advocacy Training, we cordially invite you to submit a poster about an advocacy project, an initiative you put forward in your country/region or any other opportunity that you have been working on to advocate in the area of CAYA cancer.

We are looking for best practice examples that will be presented to show the great wealth of patient advocacy going on in our countries during the patient advocacy market place session on Saturday, 25th November, 10:00am – 11:00 am.

Topics can include awareness initiatives, policy events, round table discussions, media appearances and audio-visual campaigns etc. which you have been or will be part of. The sky is the limit. If you are not sure if your topic fits, don't hesitate to ask us!

Procedure:

• During this session you will stand with your poster, while the other participants will be divided into small groups that will walk from poster to poster at 5-10 minute intervals (depending on how many posters are submitted).
• We therefore ask you to limit the content of your poster to the essentials so that it can be explained in a maximum of 5 minutes and there is time for questions and answers.
• All Ambassadors receive a template. In case you would like to submit a poster, please fill in the template by Monday, 20th November 9am CET and send it to ambassador@beatcancer.eu. CCI Europe will then print your poster and bring it to the event. Please note that submissions after the deadline can no longer be considered.

We would be delighted to receive numerous submissions!

6.2 Appendix 2 - Lithuanian Policy Event

Policy event "Transition of Care from Pediatric to Adults" – Agenda

6.3 Appendix 3 - Spanish Policy Event

Policy event "Seguimiento a largo plazo de jóvenes supervivientes de cáncer del desarrollo" – Agenda (as published, in Spanish)

6.4 Appendix 4 - Sarajevo Event

Regionalna konvencija mladih izliječenih od raka, 8.–12. August – Agenda (as published, in Bosnian). Motto: "Brinem o sebi, volim sebe". Partner organisations shown: Krijesnica, Fenix, Srce za djecu, Iskra, Ustanova Mali vitez, Čika Boca, Childhood Cancer International Europe, European Network of Youth Cancer Survivors.

Dan 1 – Utorak, 8.8.

• 13:00 – 14:00 – okupljanje u hotelu Courtyard by Marriott Sarajevo, pozdravljanje i upoznavanjem sa planom konvencije
• 14:30 – ručak u hotelu
• 17:00 – okupljanje za otvaranje konvencije:
  • Predstavljanje domaćina (Udruženje Srce za djecu), CCI Europe i sponzora konvencije
  • Predstavljanje gostiju
  • Predstavljanje učesnika (meet and greet)
  • Radionica "Šta ima" (predstavljanje problema/rješenja koje mladice imaju sa follow up)
• 19:00 – večera u hotelu
• 20 – 21:30 – Zabavno/edukativni program (kviz Nisam ti pametan) 1:30 h
• Slobodno vrijeme

Dan 2 – Srijeda, 9.8.

• do 9:00 – doručak
• 9:45 – odlazak na piramide
• 10:45 – obilazak parka ravne sa Osmanagićem i kafe pauza
• 13:30 – ručak
• Prikazivanje filma Heroj
• 19:00 – večera u hotelu

Dan 3 – Četvrtak, 10.8.

• do 10:00 – doručak
• Obilazak Sarajeva (agencija insajder – kombinovana tura)
• 19:00 – večera na tabiji
• Slobodno vrijeme

Dan 4 – Petak, 11.8.

• do 9:00 – doručak
• 9:30 – 11:00 – Radionica sa Dr. Lornom
• 11:15 (dolazak u 12:30) – polazak na Javorov do
• Avanturističko/sportska aktivnost (šetanje, zabavne igre)
• Ručak
• Motivaciona radionica Ina i Sabina
• Pisanje pisama
• Rimska diskusija na balkanski način sa doktoricama (integrisanje follow up programa u tvoju sredinu)
• 19:00 – večera u hotelu
• SFF zatvaranje konvencije

Dan 5 – Subota, 12.8.

• doručak i igramo se razlaza

Hvala i vidimo se sljedeće godine!

6.5 Appendix 5 - Zagreb Regional Event

Participant evaluation of the Zagreb Regional Convention (31 responses per question; ratings on a scale of 1 to 5).

6.6 Appendix 6 - Closing Event

Programme overview

07 – Wednesday

• 08:00 and all day – Arrivals
• 14:00 and all day – Registrations at the XXI Dormitory of the Sport University campus
• 20:00 – Networking dinner at Boema House

08 – Thursday

• 08:00 – Breakfast available at campus (main lobby, registration area)
• 09:30 – General Assembly Meeting (Hybrid Set-Up) (see map for reaching the Conference Hall)
• 13:00 – Lunch served at the Conference Hall
• 14:00 – Interactive workshops for all participants – Workshop 1 In the focus: Adolescent and Young Adult Cancer Care and EDI: ensuring Equity, Diversity, and Inclusion in Cancer Care
• 16:00 – Group photo on campus (If you're not in the picture, you were not here. Make sure you don't miss it!)
• Dinner at the UNTOLD Festival grounds
• 20:30 – UNTOLD group photo (exact location to be confirmed)
• UNTOLD Meet & Greet for selected participants with Blasterjaxx (timing TBC)

09 – Friday

• 09:00 – 11:00 – Breakfast available at campus
• 13:00 – Lunch served at Conference Hall
• 14:00 – Interactive workshops for all participants – Workshop 2 In the focus: Position paper "Mental Health & Psychosocial Care after CAYA cancer – Standard, not luxury" / Education and Career Support
• Dinner at the UNTOLD Festival grounds
• UNTOLD Meet & Greet for selected participants with ALOK (timing TBC)
• UNTOLD Meet & Greet for selected participants with Dimitri Vegas & Like Mike (timing TBC)
• UNTOLD Meet & Greet for selected participants with Lost Frequencies (timing TBC)
• UNTOLD Meet & Greet for selected participants with Zerb (timing TBC)

10 – Saturday

• 09:00 – 11:00 – Breakfast available at campus
• 13:00 – Lunch served at Conference Hall
• 14:00 – Interactive workshops for all participants – Workshop 3 In the focus: long term follow-up care after cancer / Recommendations for Transition from Paediatric to Adult Cancer Care
• Dinner at the UNTOLD Festival grounds
• UNTOLD Meet & Greet for selected participants with Tujamo (03:00 am)
• UNTOLD Meet & Greet for selected participants with Sam Smith (timing TBC)

11 – Sunday

• 09:00 – 11:00 – Breakfast available at campus
• 13:00 – Lunch served at Conference Hall
• 14:00 – Interactive workshops for all participants – Workshop 4 Sustainability: Creating an action plan for the sustainability of beatcancer.eu + FB + instagram + youtube + discord after the end of the project
• Dinner at the UNTOLD Festival grounds
• UNTOLD Meet & Greet for selected participants with Martin Garrix (01:00 am)
• UNTOLD Meet & Greet for selected participants with Nicky Romero (02:30 am)

12 – Monday

• 09:00 – 11:00 – Breakfast available at campus
• 12:00 – Departures

6.7 Appendix 7 - Dissemination Activities

References

1. In the Grant Agreement, WP5 is described as focusing on Equality, Diversity and Inclusion; however, through activities in WP5, it was decided that Equity rather than Equality was a better term. Thus, results of the project focus on Equity, Diversity and Inclusion.
2. As metrics under objectives in Annex 1, Part B, section 1.2 and metrics in section Annex 1, Part B, section 3.2.
3. 30 participants were registered but two were unable to join.
4. Event description: /event/2nd-eu-cayas-net-ambassador-training-24th-25th-nov-in-vienna/
5. Press release at national level in Austria on APA-OTS (https://www.ots.at/presseaussendung/OTS_20231129_OTS0042/junge-krebs-survivors-uebernehmen-das-ruder-bild)
6. Vienna Declaration: /wp-content/uploads/2024/06/EU-CAYAS-NET-Vienna-Declaration-1.pdf
7. Event description: /event/policy-event-transition-of-care-from-pediatric-to-adults/
8. Vilnius Declaration: /resources/transition/publication/vilnius-declaration-on-transition-from-pediatric-to-adult-cancer-care/
9. https://www.youtube.com/watch?v=YPtmHGo3UZg
10. Barcelona Declaration: /wp-content/uploads/2024/06/EU-CAYAS-NET-Declaration-Barcelona_2.pdf
11. https://sarajevotimes.com/regional-convention-of-young-people-cured-of-cancer-in-sarajevo/
12. /project-deliverables/
13. /wp-content/uploads/2024/07/EU-CAYAS-NET_Quality-of-Life_White_Paper.pdf
14. /resources/quality-of-life/article/quality-of-life-project-outputs/
15. /wp-content/uploads/2024/10/EU-CAYAS-NET-D3.1_readyforupload.pdf
16. /resources/quality-of-life/article/quality-of-life-project-outputs/
17. /resources/mental-health/brochure/pocket-cards-for-mental-health-awareness-and-guidance/
18. /wp-content/uploads/2024/07/EU-CAYAS-NET-D3.2-submission-26Jul2024.pdf
19. /resources/career/article/educational-career-pathways-cancer-survivors/
20. https://www.pancare.eu/european-map/
21. /wp-content/uploads/2024/07/EU-CAYAS-NET-D3.4-submission-05Nov2024.pdf
22. /resources/quality-of-life/article/quality-of-life-project-outputs/
23. /wp-content/uploads/2024/07/From-Experience-to-Action-A-Guide-to-Talking-with-Survivors-About-Late-Effects_First-draft_darksketches.pdf
24. /resources/long-term-follow-up-care/report/aya-cancer-care-insights-europe/
25. https://www.youthcancereurope.org/yce-conducts-5-hospital-peer-visits-in-europe/
26. /wp-content/uploads/2024/03/Establishing-Minimum-Standards-of-Care-for-Adolescents-and-Young-Adults-AYA-Across-Europe.pdf
27. /wp-content/uploads/2024/07/Minimum-Standards-of-Specialist-Adolescent-and-Young-Adult-AYA-Cancer-Care-Units-Position-Paper-3.pdf
28. /resources/quality-of-life/guidelines/recommendation-and-implementation-roadmap-for-minimum-standards-of-specialist-adolescentand-young-adult-aya-cancer-care-units-position-paper/
29. /wp-content/uploads/2025/02/AYA-Pocket-Card.pdf
30. /event/equitable-diverse-and-inclusive-cancer-care-in-europe/
31. /resources/equality-diversity-and-inclusion/article/recommendations-for-equitable-cancer-care/
32. /wp-content/uploads/2024/04/Equity-Diversity-and-Inclusion-Principles-in-Cancer-Care-Train-the-Trainer-Toolkit_compressed.pdf
33. /resources/equality-diversity-and-inclusion/article/recommendations-for-equitable-cancer-care/
34. /wp-content/uploads/2025/02/EDI-Pocket-Card.pdf

Funding and disclaimer

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 European Health and Digital Executive Agency (HaDEA). Neither the European Union nor the granting authority can be held responsible for them.