Europska mreža mladih oboljelih od raka
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.
Naša vizija
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.
Naša misija
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.
Što je YARN?
Europska mreža za rak mladih (YARN) projekt je sufinanciran sredstvima EU-a koji okuplja 19 organizacija korisnica i više od 40 pridruženih partnera diljem Europe. YARN je usmjeren na vršnjačku podršku, mentalno zdravlje, obrazovanje i profesionalnu reintegraciju, dugoročno praćenje te jednakost u onkološkoj skrbi za djecu, adolescente i mlade odrasle osobe. U samom središtu projekta nalazi se Youth Cancer Council - paneuropska savjetodavna skupina od 100 mladih ljudi s osobnim iskustvom raka koja oblikuje projektne odluke i rezultate. Projekt kroz osam međusobno povezanih radnih paketa pruža okvire utemeljene na dokazima, digitalne alate, programe osposobljavanja i kampanje za podizanje javne svijesti.
Obuhvaća 25 država članica EU i 3 prihvatljive susjedne zemlje, a provodi ga 19 korisnika projekta, 1 pridružena organizacija, i 39 pridruženih partnera, YARN je najveći europski napor ove vrste, vođen iskustvom mladih, s ciljem poboljšanja kvalitete života djece, adolescenata i mladih odraslih pogođenih rakom.
Na kraju projekta, YARN će imati:
- Obučio 100 mladih zagovaratelja za rak
- Dosegnuo 50 milijuna ljudi kroz kampanje podizanja svijesti
- Proveo EDI standarde u 10 zdravstvenih ustanova i 10 organizacija pacijenata
- Proveo i evaluirao Smjernice za tranziciju skrbi u dva centra izvrsnosti
- Organizirao događanja za donositelje politika diljem Europe, uključujući Europski parlament i nacionalne vlade
- Isporučio višejezičnu digitalnu platformu s kvalitetnim i pristupačnim informacijama i resursima
Nasljeđe projekta bit će snažniji i uključiviji sustav za mlade pogođene rakom—osmišljen s njima i za njih.
Pregled projekta YARN
Europska mreža za rak mladih (YARN) projekt je sufinanciran sredstvima EU-a koji okuplja 19 organizacija korisnica i više od 40 pridruženih partnera diljem Europe. YARN je usmjeren na vršnjačku podršku, mentalno zdravlje, obrazovanje i profesionalnu reintegraciju, dugoročno praćenje te jednakost u onkološkoj skrbi za djecu, adolescente i mlade odrasle osobe. U samom središtu projekta nalazi se Youth Cancer Council - paneuropska savjetodavna skupina od 100 mladih ljudi s osobnim iskustvom raka koja oblikuje projektne odluke i rezultate. Projekt kroz osam međusobno povezanih radnih paketa pruža okvire utemeljene na dokazima, digitalne alate, programe osposobljavanja i kampanje za podizanje javne svijesti.
Preuzmi pregled projekta (PDF)YARN projekt letak
Preuzmite naš opsežni letak kako biste saznali više o projektu YARN, njegovim ciljevima i načinu na koji podupire mlade pogođene rakom diljem Europe.
Preuzmi letak (engleski)Dostupni prijevodi
EDI kontrolni popis za samoprocjenu za organizacije pacijenata
Jednakost, raznolikost i uključivost (EDI) znači osigurati da ljudi ne budu isključeni ili stavljeni u nepovoljan položaj zbog čimbenika kao što su invaliditet, dob, spol, jezik, etnička pripadnost, mjesto stanovanja ili njihove financijske okolnosti.
EDI kontrolni popis za samoprocjenu koji je izradio Youth Cancer Europe pomaže organizacijama pacijenata promisliti o tome mogu li ljudi jednako pristupiti njihovim aktivnostima i uslugama, sudjelovati u njima i imati koristi od njih te prepoznati praktična područja za poboljšanje.
Zahvalni smo volonterima i partnerskim organizacijama (LIGA, UBB, CF IF, UCA, EDS, POLA, PMC, HCS, SKCF, PanCare) koji su podržali prijevod kontrolnog popisa, pomažući da ovaj resurs bude dostupan većem broju zajednica diljem Europe.
Ovu je publikaciju izradio Youth Cancer Europe u okviru projekta European Youth Cancer Network, uz doprinos Youth Cancer Council-a, čije su životno iskustvo i povratne informacije pomogli oblikovati ovu publikaciju.
Njezin sadržaj i koncept oslanjaju se na Recommendations for Equitable, Diverse and Inclusive Cancer Care i EDI Train-the-Trainer Toolkit. Kontrolni popis također je usklađen s dokumentom Recommendations and Implementation Roadmap for Minimum Standards of Specialist Adolescent and Young Adult Cancer Care Units, čime se osigurava usklađenost sa širim standardima za pravednu skrb o oboljelima od raka usmjerenu na osobu.
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
Naša europska mreža
Kliknite na zemlje i istražite naše partnerske korisnike diljem Europe
Europska mreža mladih oboljelih od raka
Istražite našu mrežu diljem Europe – korisničke organizacije koje provode YARN i pridruženi partneri koji zajedno jačaju podršku mladima oboljelima od raka
Pregled mreže
Naši partnerski korisnici
Organizacije koje izravno provode YARN diljem 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
Pridruženi partneri
Organizacije koje surađuju na jačanju podrške mladima s iskustvom raka
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
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Web stranica
www.beatcancer.euPratite nas
Ostanite povezani i pridružite se našoj zajednici na društvenim mrežama
Nadogradnja na EU-CAYAS-NET
YARN se temelji na temeljima koje je postavio EU-CAYAS-NET, europski projekt koji je stvorio platformu beatcancer.eu i uspostavio Europsku mrežu mladih preživjelih od raka. Saznajte više o ovoj pionirskoj inicijativi koja je okupila organizacije iz 18 europskih zemalja.
OAC nas povezuje (OACCUs)
OACCUs je bio EU financiran projekt (2021.-2024.) koji je okupio četrnaest partnera iz šest država članica EU s ciljem razvoja europske mreže za mlade preživjele od raka, s naglaskom na kvalitetu života kroz zdrav način života i povezivanje vršnjaka.
Pridružite se Europskoj mreži mladih oboljelih od raka
Budite dio mreže koju pokreće zajednica i koja osnažuje mlade s iskustvom raka diljem Europe. Povežite se s vršnjacima, pristupite korisnim resursima, sudjelujte u kampanjama i događanjima te pomognite oblikovati budućnost skrbi za mlade oboljele od raka.
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