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YCE’s Ana-Maria Totovina presents our work on Adolescent and Young Adult (AYA) at the Romanian Parliament

Posted on by Florin Barnea

YCE patient advocate Ana-Maria Totovina represented the voice of Romanian patients and youth cancer survivors at a conference held at the Romanian Parliament on the National Day of Cancer Survivors hosted by Senator Nicoleta Pauliuc.

Ana presented our work within the European Union Co-funded project European Network of Youth Cancer Survivors, where we lead the Adolescent and Young Adult (AYA) Cancer Care Work Package! As the co-leader of the AYA Work Package, Ana shared insights about the peer visits we conducted, the guided tours to outpatient and inpatient clinics, the group discussions with healthcare professionals, the range of AYA services offered in different hospitals, and the various materials designed for young people. All of these helped us formulate and develop specific recommendations to address the real needs of youth cancer patients and survivors. 

Ana’s personal experiences added a layer of vulnerability to the discussion, as she highlighted critical yet often neglected issues regarding the needs of oncology patients. She stressed the importance of recognizing Adolescents and young adults (AYAs) as a distinct group within healthcare, ensuring access to mental health services during and after treatment, preserving fertility for both genders, offering sexual health counseling, and involving patients in interdisciplinary care discussions. Implementing these measures would greatly improve the overall experience for cancer patients.

“I would like to bring to your attention a very important topic to me and to the young patients I’ve worked with: the specific needs of Adolescents and Young Adults (AYAs). As part of my role in coordinating the Adolescent and Young Adult (AYA) Cancer Care Work Package within the European Union Co-funded project European Network of Youth Cancer Survivors, I visited several hospitals in Italy, Belgium, and the Netherlands. There, I observed how the medical system is beginning to adapt to the specific needs of AYAs and involve them in the implementation of new cancer care procedures.

During these visits, 30 young cancer survivors observed the healthcare professionals’ environment, interacted with staff and patients, conducted interviews, and noted specific aspects of care for Adolescent and Young Adult (AYA) Cancer Care. They focused on specific aspects of care for Adolescents and Young Adults (AYAs), including long-term follow-up of late effects and transition from pediatric to adult oncology. After each visit, a structured report was completed, which enabled us to write specific recommendations that directly address and reflect the real needs of AYA patients: 

  • More specific information tailored to Adolescents and young adults (AYAs)
  • Recognizing Adolescents and young adults (AYAs) as a unique group in all healthcare areas
  • Accessible Mental Health Care tailored to Adolescents and Young Adults (AYAs), available both during and after treatment.
  • Include fertility counselling and treatment options for fertility preservation and reproductive planning before, during, and after cancer treatment. 
  • Sexual health counselling
  • Invest in Training, Education, and Resource Optimization for Healthcare Professionals to provide a more tailored cancer care
  • implementation of specific and targeted Adolescents and Young Adults (AYAs) policies and practices
  • Engaging Adolescents and Young Adults (AYAs) to participate in Care Discussions and Shared Decision-Making and the list goes on”

Read the full English version of our “Minimum Standards of Specialist Adolescent and Young Adult (AYA) Cancer Care Units” Position Paper HERE.

Read more on our General Report on Adolescent and Young Adult (AYA) Cancer Care HERE.

Watch the video from the “Peer Visit as Research Method” Training in Brussels HERE.

Watch the video from our Peer Visits HERE.

FORTEe – Get Strong To Fight Childhood Cancer

Posted on by Katie

An exercise intervention for children and adolescents undergoing anti-cancer treatment

What is FORTEe?

FORTEe is an international research project that brings together 16 institutions from eight European countries. It is one of the world’s largest studies in paediatric exercise oncology, receiving funding from the European Union’s Horizon 2020 Research and Innovation Grant. The study aims to investigate the effects of an individualised exercise programme and adapted digital +health technologies in children and young people who are undergoing intensive cancer treatment.

What is the mission of FORTEe?

Maybe you experienced yourself that while going through cancer treatment, a vicious cycle of physical inactivity makes you feel weak and you don’t move around much. Sometimes this happens because of the treatment, the illness itself, or just dealing with all the emotions. In adult cancer patients, it was shown that physical activity and specific exercise training can really help, making them feel less tired, improving their quality of life, and even reducing pain or other complications during treatment.

But what about childhood cancer patients and adolescents?

Until now, precision exercise training has not been part of standard care in paediatric oncology and does therefore not reach most young patients. FORTEe is here to change that!

The big goal of FORTEe is to gather solid evidence that personalized exercise can make a real difference in the care and well-being of children and adolescents with cancer. The FORTEe partners have teamed up to run a special clinical trial focused on childhood cancer patients, aged 4 to 21, who are undergoing anti-cancer treatment.

Why do we do this?

We believe that every young cancer fighter deserves the best care possible. We hope that with the results from our FORTEe clinical trial, we can pave the way for customized exercise training to become a standard part of the care that children, adolescents and young adults (CAYA) with cancer receive all across Europe. This means in the future, more young patients could get access to a specific exercise plan to help them feel better during cancer treatment.

Together we #GetStrongToFightChildhoodCancer!

Are you interested to know more about the FORTEe project and the clinical trial?

Have a look at our website: www.fortee-project.eu/

It is also available in Italian and German!

Follow FORTEe on social media, so you are up-to-date with the latest project news! 

FORTEe on Instagram: https://www.instagram.com/fortee_project/

FORTEe on X/Twitter: https://twitter.com/Fortee_project

FORTEe on LinkedIn: https://www.linkedin.com/company/fortee

FORTEe on Facebook: https://www.facebook.com/FORTEeProject

Here you can find the FORTEe English flyer

The FORTEe project aims to demonstrate that precision-based exercise training during cancer treatment in CAYAs is a safe and potentially effective therapy to counteract fatigue, maintain strength, coordination, and overall improve quality of life. For the exercise training, no specific facility is needed, many exercise routines can be done in the patient’s room! Carefully crafted by the FORTEe consortium, these illustrations are part of training and testing guides, assisting young cancer fighters and their physicians and physiotherapists through exercise routines, specifically tailored for each patient’s journey.  

All rights reserved; reproduction or use of the illustrations requires prior permission from the copyright owner, F. Lanfranconi et al.

Robin, from Sweden, was diagnosed at the very early age of 9. In this interview, he tells us about his cancer journey.

Posted on by Shajjad Rizvi

Robin, from Sweden, was diagnosed at the very early age of 9. In this interview, he tells us about his cancer journey, his experience with his doctors and how that shaped the person he is today. Robin is an active collaborator of the charity Ågrenska. He regularly visits hospitals where he talks to childhood cancer patients about his own experience, in addition to organising two charity golf tournaments of his own. Find out more about Robin’s journey in this video

Win Tickets to Untold Festival in Cluj-Napoca, Romania 2018

Posted on by Shajjad Rizvi

We’ve teamed up with the amazing Untold Festival in Cluj-Napoca, Romania, to once again invite a number of lucky survivors to this year’s festival, taking place 2nd-5th August. 2018’s spectacular line-up includes The Prodigy, Bonobo, Armin Van Buuren, Dimitri Vegas & Like Mike, Afrojack and many more!

We have 5 double passes to give away, scroll down for the terms and conditions and to enter the competition!

Terms and Conditions for YCE Untold Festival Competition

  1. The competition is open to former cancer patients associated with Youth Cancer Europe and any of its network members who are aged 18 years or over, except employees of Youth Cancer Europe and their affiliated companies, their families or agencies or anyone professionally connected with the promotion. The Promoter reserves the right to verify the eligibility of entrants.
  2. To enter, email contact@youthcancereurope.org using the subject line “Untold Festival Competition”, telling us why you would like to attend Untold Festival 2018.
  3. The Promoter reserves the right to decline any entries that are defamatory or in breach of any applicable legislation or regulations.
  4. Out of all email entries, 5 winners will be drawn and given a pair of tickets each to attend this year’s Untold Festival in Cluj-Napoca, Romania.
  5. Closing date for entries is 23:59 CET on 15th March 2018. Any entries received after the closing date will not be accepted.
  6. The winner will be notified by email after 23:59 CEST on 15th March 2018. Winners are required to provide their full names, passport/EU ID card details, date of birth, phone number and email addresses so that they can be contacted by Youth Cancer Europe regarding prize delivery/collection details, travel and accommodation arrangements and in the event of artist meet-and-greet to facilitate access.
  7. Youth Cancer Europe will be providing tickets to attend the festival. Where possible, Youth Cancer Europe will also provide travel and accommodation for the winners. If a winner is unable to attend, they must notify Youth Cancer Europe as soon as possible to allow their prize to be re-allocated.
  8. Judges decision is final and no correspondence will be entered into regarding the outcome of the Prize awarded.
  9. The prize is non-transferable and no cash alternative is available. The Promoter reserves the right to substitute the prize for one of equal or greater value.
  10. The Promoter reserves the right to terminate, amend or extend this promotion in the event of exceptional circumstances outside its control, which affect its ability to operate the promotion.
  11. The winners are required to send photos and short testimonials from their experience at Untold Festival and to allow these to be shared on Youth Cancer Europe’s social media channels and website.
  12. Where artist meet-and-greets are organised by Youth Cancer Europe, the winners agree to have their picture taken for use in press and for social media promotions by Youth Cancer Europe.
  13. Access to artists’ meet-and-greets are subject to availability and are not guaranteed by Youth Cancer Europe. Where winners are granted access, please note that the same cannot be guaranteed for their guests.
  14. In administrating this promotion the Promoter will not collect more of your personal information than absolutely necessary and will only use your personal information for the purposes of this promotion.
  15. The rules of this competition shall be governed by and construed in accordance with the laws of Romania and shall have exclusive jurisdiction in relation to any disputes arising therefrom.

Promoter:

Youth Cancer Europe Foundation
Cluj-Napoca, Romania

*Prize details:

5x pairs of tickets to attend Untold Festival 2018 (2nd – 5th August 2018) (one pair per winner to attend with a guest of their choice)

Access to artist meet-and-greets where possible and as facilitated by Untold and/or the artists directly

Travel and accommodation will only be supplied where possible and are not guaranteed