Netwerk Ewropew tal-Kanċer taż-Żgħażagħ
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.
Il-Viżjoni Tagħna
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.
Il-Missjoni Tagħna
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.
X'inhu YARN?
In-Network Ewropew tal-Kanċer taż-Żgħażagħ (YARN) huwa proġett kofinanzjat mill-UE li jiġbor flimkien 19-il organizzazzjoni benefiċjarja u aktar minn 40 sieħeb assoċjat madwar l-Ewropa. YARN jiffoka fuq l-appoġġ bejn il-pari, is-saħħa mentali, l-edukazzjoni u r-reintegrazzjoni fil-karriera, is-segwitu fit-tul, u l-ekwità fil-kura tal-kanċer għat-tfal, l-adolexxenti u ż-żgħażagħ adulti. Fil-qalba tiegħu hemm il-Kunsill taż-Żgħażagħ bil-Kanċer - grupp konsultattiv pan-Ewropew ta’ 100 żagħżugħ u żagħżugħa b’esperjenza diretta tal-kanċer li jsawru d-deċiżjonijiet u r-riżultati tal-proġett. Il-proġett jipprovdi oqfsa bbażati fuq l-evidenza, għodod diġitali, programmi ta’ taħriġ, u kampanji ta’ sensibilizzazzjoni pubblika permezz ta’ tmien Pakketti ta’ Ħidma interkonnessi.
Li tkopri 25 Stat Membru tal-UE u 3 pajjiżi ġirien eliġibbli, u mwettaq minn 19-il Benefiċjarju, 1 Entità Affiljata, u 39 Sieħeb Assoċjat, YARN huwa l-akbar sforz Ewropew mmexxi minn esperjenza diretta biex itejjeb il-kwalità tal-ħajja ta' tfal, adoloxxenti u żgħażagħ milquta mill-kanċer.
Sa tmiem il-proġett, YARN ikun:
- Iffaċilita taħriġ għal 100 avukat żagħżugħ tal-kanċer
- Laħaq 50 miljun persuna permezz ta' kampanji ta' għarfien
- Implimenta standards EDI f’10 istituzzjonijiet tas-saħħa u 10 organizzazzjonijiet tal-pazjenti
- Implimenta u evalwa l-Linji Gwida għat-Tranżizzjoni tal-Kura fiż-żewġ ċentri ta' prattika eċċellenti
- Ospita avvenimenti ta' politika madwar l-Ewropa, inkluż fil-Parlament Ewropew u gvernijiet nazzjonali
- Ipprovda pjattaforma diġitali b’diversi lingwi b’informazzjoni u riżorsi ta' kwalità għolja u faċli għall-utent
Il-wirt tal-proġett se jkun sistema aktar b’saħħitha u inklużiva għaż-żgħażagħ milquta mill-kanċer—iddisinjata magħhom u għalihom.
Ħarsa ġenerali tal-proġett YARN
In-Network Ewropew tal-Kanċer taż-Żgħażagħ (YARN) huwa proġett kofinanzjat mill-UE li jiġbor flimkien 19-il organizzazzjoni benefiċjarja u aktar minn 40 sieħeb assoċjat madwar l-Ewropa. YARN jiffoka fuq l-appoġġ bejn il-pari, is-saħħa mentali, l-edukazzjoni u r-reintegrazzjoni fil-karriera, is-segwitu fit-tul, u l-ekwità fil-kura tal-kanċer għat-tfal, l-adolexxenti u ż-żgħażagħ adulti. Fil-qalba tiegħu hemm il-Kunsill taż-Żgħażagħ bil-Kanċer - grupp konsultattiv pan-Ewropew ta’ 100 żagħżugħ u żagħżugħa b’esperjenza diretta tal-kanċer li jsawru d-deċiżjonijiet u r-riżultati tal-proġett. Il-proġett jipprovdi oqfsa bbażati fuq l-evidenza, għodod diġitali, programmi ta’ taħriġ, u kampanji ta’ sensibilizzazzjoni pubblika permezz ta’ tmien Pakketti ta’ Ħidma interkonnessi.
Niżżel ħarsa ġenerali tal-proġett (PDF)Leaflet tal-Proġett YARN
Niżżel il-fuljett komprensiv tagħna biex issir taf aktar dwar il-proġett YARN, l-objettivi tiegħu, u kif jappoġġa liż-żgħażagħ affettwati mill-kanċer madwar l-Ewropa.
Niżżel il-Leaflet (bl-Ingliż)Traduzzjonijiet Disponibbli
Lista ta’ Kontroll ta’ Awtovalutazzjoni tal-EDI għall-Organizzazzjonijiet tal-Pazjenti
L-Ekwità, id-Diversità u l-Inklużjoni (EDI) tfisser li niżguraw li n-nies ma jiġux esklużi jew żvantaġġati minħabba fatturi bħal diżabilità, età, ġeneru, lingwa, etniċità, fejn jgħixu, jew iċ-ċirkostanzi finanzjarji tagħhom.
Il-Lista ta’ Kontroll għall-Awto-Valutazzjoni tal-EDI żviluppata minn Youth Cancer Europe tgħin lill-organizzazzjonijiet tal-pazjenti jirriflettu dwar jekk in-nies jistgħux jaċċessaw, jipparteċipaw fi, u jibbenefikaw mill-attivitajiet u s-servizzi tagħhom b’mod ugwali, u tidentifika oqsma prattiċi għal titjib.
Aħna grati lejn il-voluntiera u l-organizzazzjonijiet sħab (LIGA, UBB, CF IF, UCA, EDS, POLA, PMC, HCS, SKCF, PanCare) li appoġġaw it-traduzzjoni tal-lista ta’ kontroll, u għenu biex din ir-riżorsa tkun aċċessibbli għal aktar komunitajiet madwar l-Ewropa.
Din il-pubblikazzjoni ġiet żviluppata minn Youth Cancer Europe fi ħdan il-proġett European Youth Cancer Network, b’kontribut mill-Youth Cancer Council, li l-esperjenza diretta u r-rispons tiegħu għenu biex din il-pubblikazzjoni tieħu forma.
Il-kontenut u l-qafas tagħha jibbażaw ruħhom fuq ir-Rakkomandazzjonijiet għal Kura tal-Kanċer Ekwa, Diversa u Inklużiva u fuq l-EDI Train-the-Trainer Toolkit. Il-lista ta’ kontroll hija wkoll allinjata mar-Rakkomandazzjonijiet u mal-Pjan Direzzjonali ta’ Implimentazzjoni għall-Istandards Minimi tal-Unitajiet Speċjalisti għall-Kura tal-Kanċer tal-Adolexxenti u l-Adulti Żgħażagħ, u b’hekk tiżgura koerenza ma’ standards usa’ għal kura tal-kanċer ekwa u ċċentrata fuq il-persuna.
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
In-Netwerk Ewropew Tagħna
Ikklikkja fuq il-pajjiżi biex tiskopri s-sieħba benefiċjarji tagħna madwar l-Ewropa
Netwerk Ewropew tal-Kanċer għaż-Żgħażagħ
Esplora n-netwerk tagħna madwar l-Ewropa – organizzazzjonijiet benefiċjarji li qed jimplimentaw YARN u sieħba assoċjati li qed jikkollaboraw biex isaħħu l-appoġġ għall-kanċer fost iż-żgħażagħ
Ħarsa Ġenerali tan-Netwerk
Is-Sieħba Benefiċjarji Tagħna
Organizzazzjonijiet li qed jimplimentaw direttament YARN madwar l-Ewropa
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
Sieħba Assoċjati
Organizzazzjonijiet li jikkollaboraw biex isaħħu l-appoġġ għaż-żgħażagħ b’esperjenza tal-kanċer
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
Ikkuntattjana
Għandek mistoqsijiet jew tixtieq tingħaqad magħna? Nixtiequ nisimgħu mingħandek.
Informazzjoni ta' Kuntatt
Websajt
www.beatcancer.euSegwina
Żomm ruħek aġġornat u ingħaqad mal-komunità tagħna fuq il-midja soċjali
Nibnu fuq EU-CAYAS-NET
YARN jibni fuq il-pedament imqiegħed minn EU-CAYAS-NET, il-proġett Ewropew li ħoloq il-pjattaforma beatcancer.eu u waqqaf in-Netwerk Ewropew tal-Sopravissuti Żgħażagħ tal-Kanċer. Skopri aktar dwar din l-inizjattiva pioniera li ġabet flimkien organizzazzjonijiet minn 18-il pajjiż Ewropew.
OAC Connects Us (OACCUs)
OACCUs kien proġett iffinanzjat mill-UE (2021-2024) li ġab flimkien erbatax-il sieħeb minn sitt Stati Membri tal-UE biex jiżviluppa netwerk Ewropew għall-sopravissuti żgħażagħ tal-kanċer, b’enfasi fuq il-kwalità tal-ħajja permezz ta' stil ta' ħajja b’saħħtu u konnessjoni bejn il-pari.
Ingħaqad man-Netwerk Ewropew tal-Kanċer għaż-Żgħażagħ
Kun parti minn netwerk mmexxi mill-komunità li jsaħħaħ iż-żgħażagħ b’esperjenza diretta tal-kanċer madwar l-Ewropa. Qabbad mal-pari tiegħek, aċċessa riżorsi faċli għall-utent, ipparteċipa f’kampanji ta' komunikazzjoni u avvenimenti, u għin tħejji l-futur tal-kura tal-kanċer għaż-żgħażagħ.
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