European Youth Cancer Network
Maintaining and strengthening the European Youth Cancer Network by providing quality information in a user-friendly way, fostering social connections, and empowering young people affected by cancer across Europe.
Our Vision
To maintain and further strengthen the European Youth Cancer Network, making quality information available in a user-friendly way to young people affected by cancer, their carers, healthcare professionals, and all stakeholders. We envision a Europe where every young person has access to comprehensive support, social networking, and digital tools throughout their cancer journey.
Our Mission
We build on previous EU co-funded projects to advance and expand the European Youth Cancer Network into a multi-actor collaborative platform. Through peer support, user-friendly resources, communication campaigns, and high-visibility events across Member States and associated countries, we empower young people to be actively engaged in decision-making, improve their quality of life, and advocate for enhanced cancer care.
What is YARN?
The European Youth Cancer Network (YARN) is an EU co-funded project bringing together 19 beneficiary organisations and over 40 associated partners across Europe. YARN focuses on peer support, mental health, education and career reintegration, long-term follow-up, and equity in cancer care for children, adolescents, and young adults. At its core is the Youth Cancer Council - a pan-European advisory group of 100 young people with lived cancer experience shaping project decisions and outcomes. The project delivers evidence-based frameworks, digital tools, training programmes, and public awareness campaigns through eight interconnected Work Packages.
Spanning 25 EU Member States and 3 eligible neighbouring countries, and delivered by 19 Beneficiaries, 1 Affiliated Entity, and 39 Associated Partners, YARN is the largest multi-stakeholder, lived experience-driven effort of its kind in Europe to improve quality of life for children, adolescents, and young adults affected by cancer.
By the end of the project, YARN will have:
- Trained 100 youth cancer advocates
- Reached 50 million people through awareness campaigns
- Implemented EDI standards in 10 healthcare institutions and 10 patient organisations
- Implemented and evaluated the Transition of Care Guideline in two best-practice centres
- Hosted policy events across Europe, including the European Parliament and national governments
- Delivered a multilingual digital platform providing high-quality, user-friendly information and resources
The project's legacy will be a stronger, more inclusive system for young people affected by cancer—designed with them, for them.
YARN Project Overview
The European Youth Cancer Network (YARN) is an EU co-funded project bringing together 19 beneficiary organisations and over 40 associated partners across Europe. YARN focuses on peer support, mental health, education and career reintegration, long-term follow-up, and equity in cancer care for children, adolescents, and young adults. At its core is the Youth Cancer Council - a pan-European advisory group of 100 young people with lived cancer experience shaping project decisions and outcomes. The project delivers evidence-based frameworks, digital tools, training programmes, and public awareness campaigns through eight interconnected Work Packages.
Download Project Overview (PDF)YARN Project Leaflet
Download our comprehensive leaflet to learn more about the YARN project, its objectives, and how it supports young people affected by cancer across Europe.
Download Leaflet (English)Available Translations
EDI Self-Assessment Checklist for Patient Organisations
Equity, Diversity and Inclusion (EDI) means making sure that people are not excluded or disadvantaged because of factors such as disability, age, gender, language, ethnicity, where they live, or their financial circumstances.
The EDI Self-Assessment Checklist developed by Youth Cancer Europe helps patient organisations reflect on whether people can access, participate in, and benefit from their activities and services equally, and identify practical areas for improvement.
We are grateful to the volunteers and partner organisations (LIGA, UBB, CF IF, UCA, EDS, POLA, PMC, HCS, SKCF, PanCare) who supported the translation of the checklist, helping make this resource accessible to more communities across Europe.
This publication was developed by Youth Cancer Europe within the European Youth Cancer Network project, with input from the Youth Cancer Council, whose lived experience and feedback helped shape this publication.
Its content and framing draw on the Recommendations for Equitable, Diverse and Inclusive Cancer Care and the EDI Train-the-Trainer Toolkit. The checklist is also aligned with the Recommendations and Implementation Roadmap for Minimum Standards of Specialist Adolescent and Young Adult Cancer Care Units, ensuring coherence with broader standards for equitable, person-centred cancer care.
Organisation of Long-term Follow-up (LTFU) care
– PLAIN language summary
All languages
This PanCare PLAIN language brochure (hereafter referred to as summary) is intended for CAYA cancer survivors, their families and caregivers, healthcare professionals seeking to improve long-term follow-up (LTFU) care, and anyone else interested in optimising the organisation of LTFU care. This summary is primarily based on the evidence-based PanCareSurFup guidelines for organisation of LTFU care for CAYA cancer survivors [1].
Why Long-Term Follow-Up (LTFU) Care Matters
About 2 in 3 survivors of childhood, adolescent and young adult (CAYA) cancer experience health issues later in life caused by the cancer or its treatment (called ) [2]. Well structured long-term follow-up (LTFU) care can help detect late effects early and provide treatment and support, if necessary. LTFU care can have a positive impact on the quality of life of CAYA cancer survivors and the health system as a whole.
In many countries in Europe structured LTFU care still needs to be established or improved [3]. This PLAIN summary provides an overview of key elements of LTFU care and how you can get started or improve already existing care.
General recommendations for LTFU care:
- All survivors of CAYA cancer should have life-long access to LTFU care.
- LTFU care should start no later than 5 years after diagnosis.
- All survivors of CAYA cancer should be considered equal partners in decisions regarding their LTFU care.
- LTFU care should follow a structured approach and.
- LTFU care should cover all domains of life (physical, mental and social wellbeing) and be provided by a multidisciplinary team.
- The needs and preferences of survivors and caregivers should be central in decisions about the organisation of LTFU care in their country/region.
What are key elements of the organisation of LTFU care?
The PanCare network formulated for the organisation of LTFU care [1]. These recommendations cover three areas: Structure of care, Personnel involved and Components of care.
What can I do?
In this PLAIN summary, we discussed the importance of LTFU care and key elements of organisation of LTFU care. It can feel overwhelming to read these recommendations, especially if LTFU care in your country still needs to be established or improved. Systemic changes take a long time and are a huge undertaking. However, small steps can already make a difference.
If you are a healthcare professional or a patient advocate and involved in organising or improving LTFU care in your country, you can use the PanCare Implementation Resources to help make changes. You do not have to start from zero - use what is already there!
If you want to get involved in systemic changes in your country, we recommend that you get in touch with national or European organisations ( PanCare, SIOP-E, CCI-E and YCE) for healthcare professionals, survivors, caregivers or patients.
If you are a survivor and want to improve your personal LTFU care, you may find it useful to take a look at the resources available on pancare.eu, beatcancer.eu and the OACCUs Toolbox. If you do not have a yet, it may also be helpful to ask your LTFU care clinic, if available, to provide one to you.
Where can I find more information?
You can use the resources linked below to explore further information and additional materials on the organisation of LTFU care:
- Implementing Survivorship Care (PanCare) - Materials that can be used for the implementation of LTFU care in your country/clinic. Among other resources, this includes:
- PanCare LTFU Guidelines for Surveillance of Late Effects - Annually updated evidence-based and consensus-based guidelines for surveillance of late effects after CAYA cancer
- PanCare PLAIN language summaries - Annually updated information about late effects and LTFU care in lay-language for survivors, families and non-specialist healthcare providers
- PanCare Survivorship Care Plan (SCP) Long Version - A treatment summary and recommendations for surveillance of late effects
- PanCare Survivorship Care Plan (SCP) Short Version - A shorter SCP including a treatment summary and recommendations for surveillance of late effects
- Joint Recommendations for Mental Health and Psychosocial Care in CAYA Cancer Survivorship - Recommendations for mental health and psychosocial care developed by healthcare professionals and CAYA cancer survivors
- European Standards of Care for Children and Adolescent with Cancer - Chapter 6 on Survivorship Care and Transition Practices - Information on care for children and adolescents with cancer, specifically best practices for LTFU care and transition
- Health-care transitions for young people living beyond childhood and adolescent cancer: recommendations from the EU-CAYAS-NET consortium - Evidence-based recommendations for transition of care
- Barriers and facilitators associated with long term follow-up care for childhood, adolescent, and young adult cancer survivors: a systematic review - Information on barriers and facilitators associated with LTFU care
[1] Michel G et al. Evidence-based recommendations for the organization of long-term follow-up care for childhood and adolescent cancer survivors: a report from the PanCareSurFup Guidelines Working Group. Journal of Cancer Survivorship. 2019;13(5):759-772. doi: https://doi.org/10.1007/s11764-019-00795-5
[2] Hudson M et al. Long-term Follow-up Care for Childhood, Adolescent, and Young Adult Cancer Survivors. Pediatrics. 2021;148(3). doi: https://doi.org/10.1542/peds.2021-053127
[3] Essig S et al. Follow-Up Programs for Childhood Cancer Survivors in Europe: A Questionnaire Survey. PLoS One. 2012;7(12):e53201. doi: https://doi.org/10.1371/journal.pone.0053201
Our European Network
Click on countries to explore our beneficiary partners across Europe
European Youth Cancer Network
Explore our network across Europe - beneficiary organizations implementing YARN and associated partners collaborating to strengthen youth cancer support
Network Overview
Our Beneficiary Partners
Organizations directly implementing YARN across Europe
Youth Cancer Europe
CCI Europe
Pagalbos Onkologiniams Ligoniams Asociacija (POLA)
Centro Internazionale per la Promozione dell'Educazione e Sviluppo (CEIPES)
Liga Portuguesa Contra o Cancro
Universidad de Cádiz
Europa Donna Slovensko
Universitatea Babeș-Bolyai
European Regional and Local Health Authorities (EUREGHA)
PanCare
Medical University of Vienna
Saving Kids with Cancer Foundation
Hellenic Cancer Society
SIOP Europe
European Oncology Nursing Society
Charity Foundation Inspiration Family
European Cancer Organisation
Fundació Sant Joan de Déu
Associated Partners
Organizations collaborating to strengthen support for young people with lived cancer experience
CanTeen Ireland
Childhood Cancer Foundation
YouCan Cancer Support Network Ireland
Deutsche Leukämie-Forschungshilfe - Aktion für krebskranke Kinder e.V
On Est Là
European Network Of Medical Residents In Public Health
Survivors Österreich
Kom op tegen Kanker
Foundation Gold
Krijesnica
Pagkyprios Syndesmos Karkinopathon Kai Filon 1986
Spolecne k usmevu, z.s.
Region Midtjylland
Sylva ry
Suomen Syöpäpotilaat ry
Karkinaki
Kyttaro
Magyar Gyermekonkologiai Halozat
Érintettek Egyesület
Lega Italiana Per La Lotta Contro I Tumori - Sezione di Palermo
Latvian Association of Oncology Patient Organizations OncoAlliance
Onkologines ligos paliesto jaunimo asociacija
Survivors Lëtzebuerg
Erasmus Universitair Medisch Centrum Rotterdam
Fundacja Pani Ani
Marzena Wieczorek-Przybylo M-Powered
Fundacja Urszuli Smok
Uniwersytet Medyczny W Lublinie
ACREDITAR
Instituto Portugues De Oncologia De Lisboa Francisco Gentil EPE
Unidade Local De Saude De Coimbra EPE
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Asociatia Little People Romania
Detom s rakovinou, n. o.
Foundation Little Knight
Ung Cancer
Viata fara leucemie, Asociatie Obsteasca
Asociatia Little People Moldova
Ung Kreft
Universitetet I Oslo
Get in Touch
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Contact Information
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Building on EU-CAYAS-NET
YARN builds upon the foundation laid by EU-CAYAS-NET, the European project that created the beatcancer.eu platform and established the European Network of Youth Cancer Survivors. Learn more about this pioneering initiative that brought together organizations across 18 European countries.
OAC Connects Us (OACCUs)
OACCUs was an EU-funded project (2021-2024) that brought together fourteen partners from six EU member states to develop an EU-wide network for young cancer survivors, focusing on quality of life through healthy lifestyle and peer connection.
Join the European Youth Cancer Network
Be part of a community-driven network that empowers young people with lived cancer experience across Europe. Connect with peers, access user-friendly resources, participate in communication campaigns and events, and help shape the future of cancer care for young people.
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