katie rizvi Archives - Youth Cancer Europe (YCE)

During last weekend’s fourth edition of Untold, Romania’s largest electronic music festival, some of the world’s biggest DJs including Armin van Buuren, Afrojack, Kygo and Danny Avila greeted youth cancer survivors from five different countries in meetings organised by Youth Cancer Europe, who specially flew the young adults in for the occasion.

A group of survivors from around the continent, aged 18-26, were given the opportunity through a social media competition organized by the charity for its network of cancer survivors, which included representation from Spain, Northern Ireland, Poland, Macedonia, and Romania. Afrojack was the first to meet the group backstage during Thursday night, while Armin Van Buuren took photos with the survivors before taking to the stage at Cluj Arena for a mammoth 7-hour headline set that wrapped up the festival. Spanish DJ Danny Avila also wore the “F*** Cancer” bracelet given to him by the group during his Saturday night set, taking to Instagram to share a photo and recall the meeting as “unbelievable”.

youth cancer survivors kygo

youth cancer survivors danny avila

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youth cancer survivors armin van buuren

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Previous meet-and-greets organised by Youth Cancer Europe for its network of survivors include Martin Garrix, Hardwell and Dimitri Vegas & Like Mike.

Katie Rizvi, CEO, and Founder of the Youth Cancer Europe Foundation said: “Once again, we were lucky to secure the opportunity to invite youth cancer survivors from across the continent to meet some of their heroes at the incredible Untold Festival in Cluj-Napoca, Romania. Afrojack, Kygo, Danny Avila and Armin van Buuren took the time to speak to each of our guests individually, take photos and sign autographs for them. These are memories that they will cherish forever and we’re always over the moon to bring these experiences to them. A huge thank you goes out from us to the DJs, as well as to the team at Untold for all their help in making this happen. Until the next time!”

Youth Cancer Europe would like to thank the UNTOLD festival for providing access to the festival and to Ecolor manufacturing and the Swedish Consulate in Cluj Napoca for sponsoring the travel and accommodation of visiting youth cancer survivors.

On May 20th we’ll be landing in Brussels for a weeklong event on The Fundamentals of EU Policymaking. Participants from 15 countries will partake in intensive workshops that will look at how the European Parliament works, what role do parliamentary committees play, what is the European Commission’s role and how does policymaking happen and why does it matter to us. This will include a workshop with a former minister of health as well as discussions with experts in global health policy.
The workshops will be followed by visits to the European Parliament where participants will meet with a Member of Parliament to gain practical insights. This will be complimented with an opportunity to grab first-hand experience of all levels of policymaking by meeting with a variety of stakeholders from permanent representations, industry associations, chambers of commerce and civil society organisations; the highlight of which will be our meeting with the team of commissioner Vytenis Andriukaitis (DG SANTE).
The Fundamentals of EU Policymaking takes place May 20th-24th in Brussels, Belgium. Follow our social media channels for more information and updates during the week!

February 4th is #WorldCancerDay. Here at Youth Cancer Europe, we continue to fight harder than ever to ensure that the voices of young cancer patients and survivors are heard across the continent, empowering them to become a key part of how cancer treatment and after-care is shaped in their own territories, and ensuring that the best possible, quality treatment is accessible to all regardless of where they come from.

In August this year we landed in Vilnius for our latest annual meeting. Over 100 attendees from 22 countries, which included cancer patients and survivors, charity workers, policy makers, patient advocates and industry figures, gathered over the course of three days of presentations, forums and panel discussions to set the Youth Cancer Europe agenda for 2018.

Fostering direct contact between different collectives, and ensuring that the voices of patients and survivors become a key part of how treatment and after-care is shaped across the continent were a major part of the discussions. Over the weekend, the sessions included examples of best practice from all over Europe, highlighting the sometimes enormous differences in quality of care offered to young patients across countries; a key issue that Youth Cancer Europe is fighting to change. Panel discussions with inspirational speakers on public policy encouraged young patients and survivors to get directly involved in policy-making and lobbying in their own countries.

Attendees were also treated to a social programme that included evening visits to some of the top landmarks in Vilnius and surrounding area, such as the Vilnius TV tower or the stunning Trakai Island.

Countries represented in the Youth Cancer Europe 2017 annual meeting included Armenia, Austria, Belarus, Bosnia & Herzegovina, Cyprus, Czech Republic, Denmark, Finland, Germany, Ireland, Israel, Italy, Latvia, Lithuania, Netherlands, Poland, Portugal, Republic of Moldova, Romania, Serbia, Sweden and United Kingdom.

“We’ve seen through the enthusiastic faces in the room, through the outcomes that we managed to achieve in 8 hours with no structure but with everyone bringing up similar topics, sharing the similar visions that there are so many things that we can do jointly.”

Sarunas Narbutas – Lithuania

  • Advisor to the President of the Republic of Lithuania
  • Lecturer on EU and International Law at Vilnius University
  • PhD Candidate (Networked Governance)
  • President of the Lithuanian Cancer Patient Society
  • Cancer survivor

“I believe meetings like this are important because it helps us get together with survivors from other countries and we can find out what issues other people face and what would be the solution on a European level.”

Floin Barnea – Romania

  • Business owner and lead designer of Digital Etiquette
  • Student at the Faculty of Philosophy and Political Sciences, Iasi
  • Cancer survivor

“I think it’s very helpful to bring people together from across Europe to try and discuss the issues they are facing with cancer despite the differences we face in funding and medical care. And I think this really has helped and we have something we can hopefully build on.”

Mathew J. Cooke – United Kingdom

  • Phd Candidate (Politics), University of Cambridge
  • Member, NHS England’s Teenage and Young People Cancer Clinical Reference Group
  • Member, NCRI Teenage and Young Adult Clinical Studies Group
  • Cancer survivor

“Being in different groups through the meeting, I managed to talk with almost all the participants from the conference and this way we were able to see the problems that are around the whole of Europe Recommended Site. ”

Ana Amariutei – Romania

  • 12th grade student at Emil Racovita National College, Iasi
  • Patient support Volunteer with Little People Romania at the Sf. Maria Children’s
  • Emergency Hospital, Iasi
  • Cancer survivor

“I liked the fact that it was an open space summit and we had freedom to speak, freedom to what meeting we wanted. We could also raise our own issues and it was a very good way to get people together.”

Floin Barnea – Romania

  • Business owner and lead designer of Digital Etiquette
  • Student at the Faculty of Philosophy and Political Sciences, Iasi
  • Cancer survivor

“Probably the most intriguing thing about this meeting was that it was an open summit, I never joined or participated in that king of meetings ever, so that was pretty impressive.”

Tomaz Dezelak – Slovenia

  • History and Theology Student at the University of Ljubljana
  • Author, The Other Me
  • Cancer survivor

“All the ideas were flowing, everybody was talking, everybody was discussing their own problems and their own issues and everybody was giving an opinion so it was a very productive day.”

Emanuel Schipor – Romania

  • Student at the Faculty of Psychology and Educational Sciences, Cluj-Napoca
  • Patient Support Volunteer
  • Assistant to Little People hospital psychologist, Institute of Oncology in Cluj-Napoca
  • Cancer survivor

“I was very impressed by the level of knowledge and the ability to communicate it in a second language to most people. I couldn’t have done that in a foreign language, so I was very much blown away by that. But also the enthusiasm and the engagement everyone had throughout the day, despite the fact we all had very little sleep and too little coffee.”

Mathew J. Cooke – United Kingdom

  • Phd Candidate (Politics), University of Cambridge
  • Member, NHS England’s Teenage and Young People Cancer Clinical Reference Group
  • Member, NCRI Teenage and Young Adult Clinical Studies Group
  • Cancer survivor

“My first reaction was not knowing what exactly was going to happen, I was a little bit afraid of the themes that were going to come up, what everybody is going to talk about, if they were really going to answer to my questions, what I was asking myself about, and I was pretty impressed to see that many people had the same questions as I had. Same themes came up that I was interested in and I was pretty impressed, I really liked it and I think it was really worthwhile coming.”

Francisco Mateos – Spain

  • Cofounder and board member of AAA – Asocoacion Espanola de Adolescentes y
  • Adultos jovenes con cancer
  • Volunteer Coordinator
  • Bachelor in Philosophy and student of Pedagogy
  • Cancer survivor

“I’m excited! For me it was a great experience, I’m grateful for being here, for being invited first of all and for being here amongst all of you, very proud for that.”

George Seremetakis – Greece

  • Double major graduate in Computer Science and Football Coaching
  • Vice-President of Kyttaro, Greek Organization of Adult Cancer Survivors
  • Cancer survivor

“I’m excited! For me it was a great experience, I’m grateful for being here, for being invited first of all and for being here amongst all of you, very proud for that.”

Mathew J. Cooke – United Kingdom

  • Phd Candidate (Politics), University of Cambridge
  • Member, NHS England’s Teenage and Young People Cancer Clinical Reference Group
  • Member, NCRI Teenage and Young Adult Clinical Studies Group
  • Cancer survivor

“I am very confident that young people can contribute on a professional level, speak with the same voice that health politicians want to hear and speak with the same competence and dignity [of] that [of] the health professionals, but in doing so there remains their own personal touch with the disease. One example [is] me living with cancer for eight years now and taking pills every day, I see that through young patients’ voice you can make a big change. It should not be localized or nationalized, it is the time for it to go global. Let’s start from something and Youth Cancer Europe is a very a timely initiative that I believe will tackle a lot of imminent needs and I believe it will attract a lot of support.”

Sarunas Narbutas – Lithuania

  • Advisor to the President of the Republic of Lithuania,
  • Lecturer on EU and International Law at Vilnius University,
  • PhD Candidate (Networked Governance),
  • President of the Lithuanian Cancer Patient Society,
  • Cancer survivor

“[Institutions] like medical and pharma are in need of an organization that connect all of the other NGOs all around Europe, not only Western Europe but also Eastern Europe, and not only NGOs but also connect patients with clinical trials, with other doctors from other countries and connect doctors between them. And I think that what I see as being done is exactly what [is needed] on the European level right now.”

Emanuel Schipor – Romania

  • Student at the Faculty of Psychology and Educational Sciences, Cluj-Napoca
  • Patient Support Volunteer
  • Assistant to Little People hospital psychologist, Institute of Oncology in Cluj-Napoca
  • Cancer survivor

“Not only do we need to empower survivors to look after themselves better, but we also need their help. As a medical research community we need the survivors to tell us what are the important questions that we need to be doing research on in the future.”

Kathy Pritchard-Jones, MBCh, Ph.d.MD – United Kingdom

  • Professor of Paediatric Oncology University College London
  • Institute of Child Health
  • Steering Committee member of ENCCA (European Network Cancer research in Children and Adolescents)

“I think survivors also should be able to express their voice and be part of the decision making process.”

Florin Barnea – Romania

  • Business owner and lead designer of Digital Etiquette
  • Student at the Faculty of Philosophy and Political Sciences, Iasi
  • Cancer survivor

“I think that the idea is very much welcome and I hope that we will be able to collaborate together and go for it strategically”

Dr. Riccardo Haupt, MD – Italy

  • Head of Epidemiology and Biostatistics Hematology and Olcology Institute Giannina Gaslini Genova, Italy
  • Founding member of PanCare

“I think that anything that gets young people with this experience to connect and share experiences and learn from each other is a good thing.”

Lars Hjorth, M.D lose belly fat fast. Ph.D. – Denmark

  • Consultant Paediatric Oncology and Hematology Department of Paediatrics, Skane University Hospital
  • Chairperson PanCare
  • Coordinator PanCareSurfUp

“It’s extremely important that all adults who went through cancer when they were young, get together, share, explain, help the new ones and help us.”

Gilles Vassal M.D. Ph.D. – France

  • Professor of Oncology in University Paris-Sud
  • Head of Clinical Research at Gustave Roussy Institute
  • President of SIOPE (European Society of Pediatric Oncolgy)
  • Founder of ENCCA (European Network Cancer research in Children and Adolescents) and ITTC

“I definitely think that a united voice is much stronger and at the very least it shows that young people are not facing these issues alone”

Mathew J. Cooke – United Kingdom

  • Phd Candidate (Politics), University of Cambridge
  • Member, NHS England’s Teenage and Young People Cancer Clinical Reference Group
  • Member, NCRI Teenage and Young Adult Clinical Studies Group
  • Cancer survivor

“Here it does not matter who you are, it matters what you’ve been through, and it matters that you are willing to share and that you stand on equal grounds with the rest of the participants. So yes, I definitely believe that Youth Cancer Europe is the perfect forum for young people with cancer to develop their full potential.”

Karina Kopriva – Romania

  • Political Science Graduate, BBU, Cluj-Napoca
  • Consultant on external affairs, Little People Romania and Republic of Moldova

The young cancer survivors often suffer from depression and have a hard time finding their place in society. The first study made in Romania on the needs of the people in this category reflects this situation. Over 200 young people participated in Cluj-Napoca at the first national seminar on long-term effects of cancer.

The attention and fertility issues or the fear of relapse were some of the topics discussed at the meeting of cancer survivors and medical specialists.

Emanuel Schip, survivor: “It is good to know what’s going to happen next, so you can prepare yourself.

Theodore Urziceanu, survivor: “The experiences of those who went through something like this could prove to be very useful.

The young people who attended also helped by participating in a study whereby the specialists could better understand the profile and needs of someone who survived cancer.

Katie Rizvi, founder of the Little People Romania: “It is a study that has never been done before. The most important thing the young people are concerned about is their fertility and the possibility of having children after cancer treatment.

The results also show that 20 percent of those who defeated the disease still suffer from chronic pain and experience difficulties in learning, while nearly 60 percent experience emotional difficulties and some of them even depression. 19 percent of those aged over 18 do not work and do not study and 16 percent face discrimination in the workplace.

Rodica Cosnarovici, Head of Pediatric Oncology Department in the Cluj Oncology Institute: “I think the most common problems that they face are psychological and reintegration problems“.

The doctors suggested that the Ministry of Health could also come to their aid, by developing a national pediatric oncology program at a national level.

Gheorghe Popa, pediatric oncologist: “Financing oncology programs for adults does not fully meet the children’s needs, as child cancer patients have special needs.

 

Originally published on 12th Dec 2015 via http://www.digi24.ro/Stiri/Digi24/Lejer/Sanatate/Supravietuitorii+cancerului+isi+cauta+locul+in+societate

205 young people who have completed their cancer treatment will participate on December 12th at the First National Seminar on Long-Term Effects of Cancer Treatment in Young Cancer Survivors organized by the Little People Association Romania in Cluj-Napoca.

The event, a first of its kind in Romania, will take place from 09.00 – 11.00 at the Grand Hotel Napoca, Cluj-Napoca, in the Forum Hall, on December 12th. The seminar addresses young people who have gone through the cancer treatment experience in their childhood or adolescence. Specialists in pediatric oncology confirmed their presence at this event, where they will be answering questions from the young cancer survivors.

“Tumors may disappear, but according to a survey from the Little People Association with young cancer survivors aged 17-31 as respondents, almost 20% of them suffer from chronic pain, have trouble learning and concentrating, while nearly 60% complain of emotional and mental exhaustion, and some of them even depression. Young people don’t have adequate information available to them on how to access social benefits, 19% of them aged over 18 are not working and not studying, 16% report discrimination at work or school. While data from all over the EU clearly shows that this group is at a high risk of developing long-term effects of cancer treatment or secondary cancers, there is no standardized long-term tracking and caring system for young survivors. Many of them go for regular checkups at the pediatrician, but most of them are lost in the whole medical process for young patients. “said Katie Rizvi, founder of the Little People Romania.

The attendees are registered members of the Temerarii Club – the Romanian Community of Young Cancer Survivors® founded by the Little People Association Romania in 2006.

The young survivors will also be delighted to participate for the eighth consecutive year at the Temerarii Christmas Gala. The theme of this year’s edition is Ice Ball. They will celebrate their victory over cancer, in Cluj-Napoca, the city where this community, the largest of its kind in Europe, was founded.

The Ice Ball – Temerarii Christmas Gala – will take place on December 12th, 2015 in the Grand Hotel Napoca, Cluj-Napoca, starting at 19:30. Media representatives are invited to raise a glass of champagne in honor of the young cancer survivors’ victory, at the event’s reception.

What Temerarii means today is more than 400 young people aged 14-30 years from over 123 localities in Romania who, from the moment they won the fight against cancer, have become true heroes, writing and rewriting daily a success story, being a true inspiration for those who now wage the same battle.

The Temerarii community is the founder of Youth Cancer Europe network – a European communication and initiative platform for the young people diagnosed with cancer, developed in 2014, with partners from 15 European countries.

Originally published 11th Dec 2015 via http://galasocietatiicivile.ro/stiri/sanatate/premiera-in-romania-seminar-national-despre-efectele-pe-termen-lung-ale-tratamentului-oncologic-la-tinerii-supravietuitori-de-cancer-15748.html