Evropska mreža mladih z rakom
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.
Naše poslanstvo
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.
Kaj je YARN?
Evropska mreža za raka mladih (YARN) je projekt, sofinanciran s strani EU, ki združuje 19 organizacij upravičenk in več kot 40 pridruženih partnerjev po vsej Evropi. YARN se osredotoča na vrstniško podporo, duševno zdravje, ponovno vključevanje v izobraževanje in kariero, dolgoročno spremljanje ter enakost v onkološki oskrbi otrok, mladostnikov in mladih odraslih. V središču projekta je Youth Cancer Council - vseevropska posvetovalna skupina 100 mladih z osebno izkušnjo raka, ki usmerja odločitve in rezultate projekta. Projekt zagotavlja okvire, utemeljene na dokazih, digitalna orodja, programe usposabljanja in kampanje za ozaveščanje javnosti prek osmih medsebojno povezanih delovnih sklopov.
Pokriva 25 držav članic EU in 3 upravičene sosednje države, izvaja pa jo 19 upravičencev, 1 pridružena entiteta, ter 39 pridruženih partnerjev, YARN je največji večdeležniški projekt v Evropi, ki temelji na izkušnjah mladih in je namenjen izboljšanju kakovosti življenja otrok, mladostnikov in mladih odraslih, ki jih je prizadel rak.
Ob zaključku projekta bo YARN dosegel:
- Usposobil 100 mladih zagovornikov na področju raka
- Dosegel 50 milijonov ljudi z ozaveščevalnimi kampanjami
- Uvedel EDI standarde v 10 zdravstvenih ustanovah in 10 bolniških organizacijah
- Uvedel in ovrednotil Smernice za prehod oskrbe v dveh vzorčnih centrih
- Organiziral dogodke za oblikovalce politik po vsej Evropi, vključno z Evropskim parlamentom in nacionalnimi vladami
- Vzpostavil večjezično digitalno platformo z visokokakovostnimi, uporabniku prijaznimi informacijami in viri
Dediščina projekta bo močnejši in bolj vključujoč sistem za mlade, ki jih je prizadel rak – zasnovan z njimi in zanje.
Pregled projekta YARN
Evropska mreža za raka mladih (YARN) je projekt, sofinanciran s strani EU, ki združuje 19 organizacij upravičenk in več kot 40 pridruženih partnerjev po vsej Evropi. YARN se osredotoča na vrstniško podporo, duševno zdravje, ponovno vključevanje v izobraževanje in kariero, dolgoročno spremljanje ter enakost v onkološki oskrbi otrok, mladostnikov in mladih odraslih. V središču projekta je Youth Cancer Council - vseevropska posvetovalna skupina 100 mladih z osebno izkušnjo raka, ki usmerja odločitve in rezultate projekta. Projekt zagotavlja okvire, utemeljene na dokazih, digitalna orodja, programe usposabljanja in kampanje za ozaveščanje javnosti prek osmih medsebojno povezanih delovnih sklopov.
Prenesi pregled projekta (PDF)Zloženka projekta YARN
Prenesite našo celovito zloženko, da izveste več o projektu YARN, njegovih ciljih in o tem, kako podpira mlade, ki jih je rak prizadel po vsej Evropi.
Prenesi zloženko (angleško)Razpoložljivi prevodi
Kontrolni seznam za samooceno EDI za organizacije pacientov
Pravičnost, raznolikost in vključenost (EDI) pomeni zagotavljanje, da ljudje niso izključeni ali postavljeni v neenakopraven položaj zaradi dejavnikov, kot so invalidnost, starost, spol, jezik, etnična pripadnost, kraj bivanja ali njihove finančne okoliščine.
Kontrolni seznam za samooceno EDI, ki ga je pripravila organizacija Youth Cancer Europe, pomaga organizacijam pacientov razmisliti o tem, ali lahko ljudje enakopravno dostopajo do njihovih dejavnosti in storitev, v njih sodelujejo ter imajo od njih koristi, ter prepoznati praktična področja za izboljšave.
Hvaležni smo prostovoljcem in partnerskim organizacijam (LIGA, UBB, CF IF, UCA, EDS, POLA, PMC, HCS, SKCF, PanCare), ki so podprli prevod kontrolnega seznama in s tem pripomogli, da je ta vir dostopen več skupnostim po vsej Evropi.
To publikacijo je razvila organizacija Youth Cancer Europe v okviru projekta European Youth Cancer Network, s prispevkom skupine Youth Cancer Council, katere neposredne izkušnje in povratne informacije so pomagale oblikovati to publikacijo.
Njena vsebina in zasnova temeljita na Priporočilih za pravično, raznoliko in vključujočo oskrbo raka ter priročniku EDI za usposabljanje usposabljalcev. Kontrolni seznam je usklajen tudi s Priporočili in izvedbenim načrtom za minimalne standarde specialističnih enot za onkološko oskrbo mladostnikov in mladih odraslih, kar zagotavlja skladnost s širšimi standardi za pravično oskrbo raka, osredotočeno na posameznika.
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 evropska mreža
Kliknite na države in spoznajte naše partnerske organizacije po Evropi
Evropska mreža mladih z rakom
Raziščite našo mrežo po Evropi – organizacije upravičenke, ki izvajajo YARN, in pridruženi partnerji, ki sodelujejo pri krepitvi podpore mladim z rakom
Pregled mreže
Naši partnerski upravičenci
Organizacije, ki neposredno izvajajo YARN po Evropi
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 partnerji
Organizacije, ki sodelujejo pri krepitvi podpore mladim z izkušnjo 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
Kontaktirajte nas
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Kontaktni podatki
E-pošta
info@beatcancer.euSpletna stran
www.beatcancer.euSpremljajte nas
Ostanite povezani in se pridružite naši skupnosti na družbenih omrežjih
Nadgradnja na EU-CAYAS-NET
YARN temelji na podlagi, ki jo je postavil EU-CAYAS-NET, evropski projekt, ki je ustvaril platformo beatcancer.eu in vzpostavil Evropsko mrežo mladih preživelih raka. Izvedite več o tej pionirski pobudi, ki je povezala organizacije iz 18 evropskih držav.
OAC Connects Us (OACCUs)
OACCUs je bil projekt, financiran s strani EU (2021–2024), ki je združil štirinajst partnerjev iz šestih držav članic EU z namenom vzpostavitve evropske mreže mladih preživelih raka, s poudarkom na kakovosti življenja preko zdravega življenjskega sloga in vrstniškega povezovanja.
Pridružite se Evropski mreži mladih z rakom
Postanite del skupnosti, ki opolnomoča mlade z izkušnjo raka po vsej Evropi. Povežite se z vrstniki, dostopajte do uporabniku prijaznih virov, sodelujte v komunikacijskih kampanjah in dogodkih ter pomagajte soustvarjati prihodnost oskrbe raka za mlade.
🔒 Zasebna skupnost • 🌍 28 držav • 💰 Vedno brezplačno • 🚪 Odhod kadarkoli