Líonra Eorpach Ailse na hÓige
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.
Ár bhFís
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.
Ár Misean
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.
Cad é YARN?
Is tionscadal é Líonra Eorpach na nÓg Ailse (YARN), atá comhmhaoinithe ag an AE, a thugann le chéile 19 n-eagraíocht thairbhí agus breis is 40 comhpháirtí gaolmhara ar fud na hEorpa. Díríonn YARN ar thacaíocht phiaraí, meabhairshláinte, ath-imeascadh san oideachas agus sa ghairm bheatha, obair leantach fhadtéarmach, agus cothromas i gcúram ailse do leanaí, d’ógánaigh, agus do dhaoine fásta óga. Ina chroílár tá an Chomhairle Óige Ailse - grúpa comhairleach uile-Eorpach de 100 duine óg a bhfuil taithí phearsanta acu ar ailse agus a mhúnlaíonn cinntí agus torthaí an tionscadail. Cuireann an tionscadal creatlaí atá bunaithe ar fhianaise, uirlisí digiteacha, cláir oiliúna, agus feachtais feasachta poiblí ar fáil trí ocht bPacáiste Oibre idirnasctha.
Ag clúdach 25 Bhallstát AE agus 3 thír chomharsanachta incháilithe, agus á chur i bhfeidhm ag 19 mBuntáisteoir, 1 Eintiteas Cleamhnaithe, agus 39 Comhpháirtí Comhlachaithe, is é YARN an iarracht is mó dá leithéid san Eoraip, faoi stiúir taithí saoil, chun cáilíocht beatha a fheabhsú do leanaí, déagóirí agus daoine óga fásta atá buailte ag ailse.
Faoi dheireadh an tionscadail, beidh YARN tar éis:
- 100 abhcóide óige ailse a oiliúint
- 50 milliún duine a bhaint amach trí fheachtais feasachta
- Caighdeáin EDI a chur i bhfeidhm i 10 n-institiúid cúraim sláinte agus 10 n-eagraíocht othar
- Treoir um Aistriú Cúraim a chur i bhfeidhm agus a mheasúnú i dhá ionad dea-chleachtais
- Imeachtaí beartais a óstáil ar fud na hEorpa, lena n-áirítear Parlaimint na hEorpa agus rialtais náisiúnta
- Ardán digiteach ilteangach a sholáthar le faisnéis agus acmhainní ardchaighdeáin atá éasca le húsáid
Fágfaidh an tionscadal oidhreacht de chóras níos láidre agus níos cuimsithí do dhaoine óga atá buailte ag ailse—deartha leo, dóibh.
Forbhreathnú ar Thionscadal YARN
Is tionscadal é Líonra Eorpach na nÓg Ailse (YARN), atá comhmhaoinithe ag an AE, a thugann le chéile 19 n-eagraíocht thairbhí agus breis is 40 comhpháirtí gaolmhara ar fud na hEorpa. Díríonn YARN ar thacaíocht phiaraí, meabhairshláinte, ath-imeascadh san oideachas agus sa ghairm bheatha, obair leantach fhadtéarmach, agus cothromas i gcúram ailse do leanaí, d’ógánaigh, agus do dhaoine fásta óga. Ina chroílár tá an Chomhairle Óige Ailse - grúpa comhairleach uile-Eorpach de 100 duine óg a bhfuil taithí phearsanta acu ar ailse agus a mhúnlaíonn cinntí agus torthaí an tionscadail. Cuireann an tionscadal creatlaí atá bunaithe ar fhianaise, uirlisí digiteacha, cláir oiliúna, agus feachtais feasachta poiblí ar fáil trí ocht bPacáiste Oibre idirnasctha.
Íoslódáil forbhreathnú an tionscadail (PDF)Bileog Tionscadail YARN
Íoslódáil ár mbileog chuimsitheach chun tuilleadh a fhoghlaim faoi thionscadal YARN, faoina chuspóirí, agus faoin gcaoi a dtacaíonn sé le daoine óga atá buailte ag ailse ar fud na hEorpa.
Íoslódáil an Bhileog (Béarla)Aistriúcháin ar Fáil
Teideal na gCloch Mhíle
Ciallaíonn Cothromas, Éagsúlacht agus Cuimsiú (EDI) a chinntiú nach ndéantar daoine a eisiamh ná a chur faoi mhíbhuntáiste mar gheall ar fhachtóirí amhail míchumas, aois, inscne, teanga, eitneacht, an áit ina gcónaíonn siad, nó a gcúinsí airgeadais.
Cuidíonn an Seicliosta Féinmheasúnaithe EDI a d’fhorbair Youth Cancer Europe le heagraíochtaí othar machnamh a dhéanamh ar cibé acu is féidir le daoine rochtain a fháil ar a ngníomhaíochtaí agus ar a seirbhísí, páirt a ghlacadh iontu agus tairbhe a bhaint astu go cothrom, agus réimsí praiticiúla feabhsúcháin a aithint.
Táimid buíoch de na hoibrithe deonacha agus de na heagraíochtaí comhpháirtíochta (LIGA, UBB, CF IF, UCA, EDS, POLA, PMC, HCS, SKCF, PanCare) a thacaigh le haistriúchán an tseicliosta, ag cabhrú leis an acmhainn seo a dhéanamh inrochtana do níos mó pobail ar fud na hEorpa.
D’fhorbair Youth Cancer Europe an foilseachán seo laistigh de thionscadal an European Youth Cancer Network, le hionchur ón Youth Cancer Council, ar chabhraigh a dtaithí phearsanta agus a n-aiseolas leis an bhfoilseachán seo a mhúnlú.
Tarraingíonn a ábhar agus a chur i láthair ar na Recommendations for Equitable, Diverse and Inclusive Cancer Care agus ar an EDI Train-the-Trainer Toolkit. Tá an seicliosta ailínithe freisin leis na Recommendations and Implementation Roadmap for Minimum Standards of Specialist Adolescent and Young Adult Cancer Care Units, rud a chinntíonn comhleanúnachas le caighdeáin níos leithne do chúram ailse cothrom agus duine-lárnach.
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
Ár Líonra Eorpach
Cliceáil ar thíortha chun ár gcomhpháirtithe buntáisteacha ar fud na hEorpa a fheiceáil
Líonra Ailse Óige na hEorpa
Fiosraigh ár líonra ar fud na hEorpa – eagraíochtaí buntáisteacha atá ag cur YARN i bhfeidhm agus comhpháirtithe comhlachaithe ag comhoibriú chun tacaíocht d’ailse óige a neartú
Forbhreathnú ar an Líonra
Ár gComhpháirtithe Buntáisteacha
Eagraíochtaí atá ag cur YARN i bhfeidhm go díreach ar fud na hEorpa
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
Comhpháirtithe Comhlachaithe
Eagraíochtaí ag comhoibriú chun tacaíocht do dhaoine óga le taithí ar ailse a neartú
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
Déan Teagmháil Linn
An bhfuil ceisteanna agat nó ar mhaith leat páirt a ghlacadh? Ba bhreá linn cloisteáil uait.
Eolas Teagmhála
Ríomhphost
info@beatcancer.euSuíomh Gréasáin
www.beatcancer.euLean Sinn
Fan ceangailte agus bí páirteach inár bpobal ar na meáin shóisialta
Tógáil ar EU-CAYAS-NET
Tógtar YARN ar bhonn EU-CAYAS-NET, an tionscadal Eorpach a chruthaigh an t-ardán beatcancer.eu agus a bhunaigh Líonra Eorpach na Marthanóirí Óige Ailse. Foghlaim níos mó faoin tionscnamh ceannródaíoch seo a thug eagraíochtaí le chéile ó 18 dtír Eorpacha.
OAC Connects Us (OACCUs)
Ba thionscadal maoinithe ag an AE é OACCUs (2021-2024) a thug le chéile ceithre pháirtí déag ó sé bhallstát AE chun líonra uile-AE a fhorbairt do mharthanóirí óige ailse, ag díriú ar cháilíocht beatha trí stíl mhaireachtála shláintiúil agus nasc piaraí.
Glac Páirt i Líonra Ailse Óige na hEorpa
Bí mar chuid de líonra atá á stiúradh ag an bpobal a thugann cumhacht do dhaoine óga le taithí ar ailse ar fud na hEorpa. Ceangail le piaraí, faigh rochtain ar acmhainní atá éasca le húsáid, glac páirt i bhfeachtais chumarsáide agus imeachtaí, agus cabhraigh le todhchaí cúraim ailse do dhaoine óga a mhúnlú.
🔒 Pobal príobháideach • 🌍 28 tír • 💰 Saor i gcónaí • 🚪 Fág am ar bith