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6 February 2014, Goffert Stadion, Nijmegen

SPACE 4 AYA

The first national seminar for both young adults affected by cancer and their healthcare professionals.


Follow the twitter feed! @SPACE4AYA

SPACE4AYA The best national care for adolescents and young adults with cancer On 6 February last, over 300 people - including 150 AYA patients - attended the SPACE4AYA seminar at the Goffert Stadion in Nijmegen. SPACE4AYA is the one and only seminar for all those involved in care of young people aged 18-35 affected by cancer (AYA patients). In the Netherlands, roughly 2,200 adolescents and young adults are diagnosed with cancer each year. They are affected by cancer in the prime of their life, just when they are maturing and finding their place in society. Although 75% of AYA patients are cured of cancer, this patient group faces big medical, psychosocial and emotional challenges both during and after treatment. That is the reason why AYA patients need specific care and support in order to help them pick up their life again. AYA patients need care which is carefully tailored to meet their needs. It is absolutely necessary for AYA patients to be involved in this process as they know best what care and support they need. Debates and dream teams At the SPACE4AYA seminar, lively debates took place between AYA patients, healthcare professionals, managers and policymakers. The seminar focused on four themes: fertility, late treatment effects, impact on work and organisation of care. At the end of each debate, a number of participants were selected for a dream team which further shaped the ideas put forward at the seminar. The seminar was led by Mr Tom van ’t Hek.

STEPPIN’FORWARD Raising money by riding through the Netherlands on a scooter. Late May 2013, 13 young Frisian adults initiated Steppin’Forward. Their aim was to raise money for the national AYA platform, for better AYA care in which AYA patients themselves are involved and for more research into and information on cancer in adolescents and young adults. To achieve this goal, they rode through the Netherlands on a scooter. In 2013, they covered 400 kilometres and raised 51.000 euros. In 2015, they aim to cover 1000 kilometres by travelling along all university medical centres and hospitals participating in the national AYA platform, in order to further enlarge the AYA platform in a symbolic manner. The Frisian girls, who are in their early twenties, are very enthusiastic about their initiative. Relay race Young people from across the Netherlands are selected for training teams. Next, the participants are put together into one team which in shifts ride on a scooter from Maastricht to Nijmegen along all university medical centres throughout the Netherlands. The team members will also ride through Leeuwarden as this city was the starting point for this action. Each shift covers no less than 500 kilometres. The shifts relieve each other every 8 hours. The Frisian girls are very enthusiastic about combining the promotion of physical exercise - which is a goal in itself - with making a substantial contribution to AYA care. What they like best about their initiative? Ingrid Riemersma, aged 22, says: “When my mother suffered from cancer, I felt powerless because I was not able to help her. Fortunately, the Steppin’Forward initiative allows us to have a significant impact”. Launching the online AYA4community Surrounded by clouds of smoke the online Aya4community was launched. This web environment allows AYA patients, caregivers and healthcare professionals to meet each other safely and anonymously and to share information and experiences. The homepage contains information about integral AYA care and various topics relevant to AYA patients. Please go to: http://www.aya4net.nl.

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9:50

11:57

NL4liveSTRONG@NL4LiveSTRONG We wensen @SPACE4AYA een mooie dag toe vandaag. Heel veel succes en plezier daar in Nijmegen!

Remco Hoogendijk@ocmer Holy Smoke wat een volle bak bij @ space4aya

AYA care: guideline & network Dream team - AYA patients - All debaters on this theme

AYA Care - which is aimed at young adults affected by cancer - involves medical as well as psychosocial aspects. The Radboud university medical centre’s AYA clinic focuses on what AYA patients need from a psychosocial point of view, and addresses the question: “What do you need?” The AYA patient’s attending specialist remains responsible for medical aspects of the

Concentration of AYA care and scientific research activities

treatment. Should we maintain this situation, or do we need to make changes? Should we set up networks of AYA patients and healthcare professionals which allow knowledge and expertise to be shared in order to develop the best possible nationwide care for and in consultation with AYA patients in the Netherlands? If so, how can we achieve this? In a lively debate led by Mr Tom van ‘t Hek, these questions and wishes were addressed.

In the ‘AYA Care Guideline and network’ session, 10 debaters from different backgrounds discussed four theses with each other and members of the audience. The AYA patients were represented by the organisations Jongeren en Kanker and the NFK.

research activities. They should not only serve as ‘research figures or material’! This is not as straightforward as it may seem. However, they should be allowed the possibility of refusing participation, as not all AYA patients are willing to participate in scientific research activities.

Who is going to pay for this? The first step is to demonstrate how vulnerable the AYA group is. Cost-effectiveness of AYA care also needs to be shown. A good organisation and registration of AYA care helps us to achieve this goals, as registration shows the effectiveness of this type of care. According to the vast majority of the participants a separate AYA care declaration system should be introduced. How do we cope with differences in care between hospitals? Hospitals are obliged to follow various guidelines. A paragraph about AYA care should be added to the existing tumour-specific guidelines. We must check whether healthcare professionals apply this to patients in all stages of illness. We must keep each other to this! And it should be our priority!

In reaction to a question asked by an AYA patient in the audience about how all this should be realised, various suggestions were put forward. They included Patient Advocacy training (standing up for patients’ rights), founding a patient organisation, or AYA Taskforces and dream teams like the ones at the Radboud university medical center. It would be fantastic if this approach, in which AYA patients and healthcare professionals provide complementary input to an issue, is also adopted by the national AYA platform!

Scientific research Adolescents and young adults often know very little about cancer. Scientific research may help to raise awareness. Less than 5% of AYA patients participate in clinical trials. AYA patients should be involved much more in scientific research activities, both in writing grant applications for funding and executing and evaluating

Debaters

Suzanne Kaal (Internist Oncologist AYA), Winette van der Graaf (Chair AYA Expertise Platform Radboud university medical center), Koos van der Hoeven (Chair SONCOS), Claudia Verkerk (Board Stichting Jongeren en Kanker), Rik van Bemmel (Patient participation, NFK), Peter Huijgens (Board IKNL), Peter Kapitein (I2L), Melvin Samsom (Vice CEO NFU & Chairman Board of Directors Radboud university medical center), Aafke Honkoop (Internist Oncologist Isala), Michael van Schaik (Managing director healthcare – Care innovation Rabobank International/ Diagnosis 2025).

To do

- Stress the urgency of integral AYA care among healthcare professionals, policymakers, health insurers; - Financing through output financing; - Focus on registering AYA care and effectiveness; - Advertise effectiveness of AYA care; - Only finance centres which have organised high-quality AYA care according to the SONCOS standards; - Include AYA care in the SONCOS standards; - Allocate a number of AYA dedicated centres; - Develop networks working together at the national AYA Platform; - Complementary input of both AYA patients and healthcare professionals’ knowledge and expertise; - Give a clear definition of the general practitioner ‘s role; - Provide healthcare professionals with an AYA alert and an AYA roadmap; - Make financing possible by the formation of coalitions; - Raise awareness among the Dutch public, policymakers and health insurers about the fact that age-specific psychosocial care is not a luxury; - Work together with regard to care, scientific research and communication.

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12.27

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Barbara Kerstens@Barbarakerstens Als je niet kunt delen, kun je ook niet vermenigvuldigen #SPACE4AYA

Nationaal AYAPlatform@aya4net Overgrote deel van de zaal is eens methode stelling: er moeten in NL verspreid 5-9 AYA poli's komen. #space4aya @SPACE4AYA

“Message from space” A unique video message was delivered by none other than astronaut and physician Mr André Kuipers. Like no other, André Kuipers knows how crucial a good collaboration between all important elements in space is. This goes not only for space travel, but also for the AYA working field. “The space has no limits”, Mr Kuipers says. Similarly, there are endless opportunities for a countless number of participants to work together to achieve the best possible AYA care.

There was great interest in the information market Various organisations and associations presented themselves at the SPACE4AYA information market. The audience was provided with (audio-visual) information about, for instance, various types of cancer including breast cancer and testicular cancer, but also about the SON Foundation (Schildklier Organisatie Nederland). The incidence of thyroid cancer is rising faster than most other types of cancer. Unfortunately, the incidence of thyroid cancer in young people is increasing, too. The stands with information on mental and especially psychosocial support such as “Spirit on “ and “Care for Cancer “ were very interesting for and of great importance to young people.

“I am certainly interested in joining the AYA community” Kim Witters – aged 27, (Not yet a member of the online AYA community)

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14.05

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Rik van Bemmel@rbemmel “Wij AYAs zijn geen werkgeversrisico. Als aya dreamteam willen wij met ambitie aan de slag” #space4aya

SPACE 4 AYA@SPACE4AYA AYA’s zijn vechters, dit laten ze ook in hun werk en tijdens sollicitaties zien. Dit zie je veel minder bij niet AYA’s.

Aya @ work At the Radboud university medical center’s AYA clinic in Nijmegen, patients ask many questions about work. Although AYA patients have a strong desire to resume their lives after finishing treatment, they are confronted with stigmata and risks for employers which may result in difficulties retaining or finding a job. What does it take to tackle and solve these problems? At the Space4AYA seminar, people from various backgrounds discussed this topic.

Showing the AYA patients’ strenght People who have or have had cancer carry a stigma when looking for a job. Twentyfive percent of the people with cancer lose their jobs, of whom fifty percent will remain unemployed. An AYA patient shared her own experiences of cancer in relation to work, which was followed by the Standing-up debate. In this debate, several questions were addressed with regard to AYA patients at work, including: what effort can you put in to give AYA patients equal opportunities of proper jobs? Or to concentrate the right information about the relation cancerAYA patient-work? And to help carrying the risks for employers? How to concentrate the right information? The Dutch healthcare system involves a lot of regulations. Perhaps there are too many rules, which may prevent the patients from having a clear view of their position. What doesn’t help either, is the fact that AYA patients are confronted with several government bodies. The Work Tab at the online AYA community environment offers all sorts of information about AYA patients and work. This could contain the Work, Education and Unemployed triptych, offering comprehensive explanation about regulation, rights and opportunities for AYA patients when you click on it. Another lead is to let hospitals concentrate knowledge about these regulations and opportunities into one person in order to provide AYA patients with good support. The AYA clinic of the AYA Expertise Platform

To do

- Don’t make any more rules, but raise awareness of the possibilities among AYA patients, healthcare professionals as well as the business community. This aim can be achieved by providing all parties with good information through, for example, AYA4 and other relevant websites, and by education; - Give AYA patients the opportunity of having proper jobs! - Keep organisations involved (Health and Safety Executives, healthcare professionals, business community) up-to-date about knowledge on cancer and financial coverage; - Know the possibilities: Awareness among AYA patients, the business community and government bodies; - Good and individual employment-finding AYA patients and employers; - Give accurate information about AYA patients and work; - Focus on the AYA and Work Tab at AYA4; - Pay attention to ‘Nuggers’; - Work on 2014 image creation: ‘cancer doesn’t mean written off’; - Enter into partnerships (2 AYA patients sharing 1 job, for instance); - Explore local and regional possibilities instead of waiting for the Dutch government to take action; - Social entrepreneurship also means creating jobs for and in consultation with AYA patients; - Develop a safety net for employers in order to provide financial coverage in case of sickness absence (guarantee fund, mandatory sickness absence insurances);

Radboud university medical center is one of the facilities providing this kind of help. Powerful people How can we make employers enthusiastic about hiring AYA patients? We can achieve this by, for instance, familiarising employers with the opportunities open to them. They can cover the risk for employers, for example, by taking out sickness absence insurance. Various positive experiences were shared, such as deploying employment officers or setting up partnerships. It also helps to show an AYA patient’s strength to employers. It is necessary for AYA patients to show themselves, as an AYA patient’s partner clearly demonstrated!

Dream team

- AYA patients - All debaters on this theme - Care for Cancer

“Don’t feel sorry for AYA patients”

In summary, it is necessary to raise awareness of the possibilities, to extend these possibilities and to combine them! Participants were selected for The Work Dream Team in order to achieve this goal. Debaters

Addie Stehouwer (Deputy National Ombudsman), André Fenneman (UWV) Jan Kuijpers (UWV), Remko Bakker (Head employment participation Radboud university medical center), Robbert Coenmans (Chair FNV Jong), Peter Theloesen (Company Medical Officer), Rosemarie Jansen (Nursing Specialist AYA, AYA Expertise Platform Radboud university medical center), Linde Bögemann (medical social worker AYA, AYA Expertise Platform Radboud university medical center), Isabelle Lebrocquy (Opuce), Jan Gerrit Schuurman & Politiebond (A care), Ragna van Hummel (Re-turn), Marjolijn Bal (Researcher Readership APG Institute of Higher Learning Rotterdam/ standing on your own feet), Marlies van Hilten (Director Emma at work), Judy van de Berg, Lucile Braam (programme manager W&I municipality of Nijmegen)

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15.23 Care for cancer@careforcancer AYA en werk: bundelen van krachten in voorlichten van werkgevers!! #Careincompany

AYA patients and fertility

“Time often is a malefactor”

Cancer treatments can have adverse effects on fertility. Nonetheless AYA patients’ wishes with regard to preserving their fertility aren’t always discussed before they start treatment. Although much progress has been made with regard to preserving fertility in both men and women, it isn’t easy to discuss this topic prior to treatments, especially when the focus is on treating cancer as quickly as possible and on tailoring treatment to the patient’s needs. After all, we deal with young people in the prime of their lives. AYA patients and healthcare professionals have much need for information about preserving fertility, and an ‘AYA alert’ is what they need most. Research has shown that it is better to discuss this topic prior to treatment, even though it is not always possible to find a way to deal with this issue. But how do we raise awareness in AYA patients as well as healthcare professionals?

Looking together for the best ways to preserve fertility “The majority of patients does not opt for having their eggs frozen from the beginning”

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The 300 participants first listened to 3 lectures given by Ina Beerendonk (gynaecologist fertility preservation, AYA Taskforce), Vivianne Tjan-Heijnen (medical oncologist) and an AYA patient. Next, a large number of panel chairs led discussions in which these three speakers participated. They tried to determine which information on fertility preservation should be given to patients prior to treatments. They also brainstormed about the way fertility preservation should be discussed, and who should give this information. Although the discussion focused on AYA patients with breast cancer, the aim is to adopt the speakers’ ideas in the treatment of AYA patients affected by other types of cancer as well.

To do

- Familiarise healthcare professionals with the AYA Checklist including fertility; - Discuss Checklist before patients start treatment; - Introduce this subject to education and teaching programmes for healthcar professionals; - Always discuss fertility; not only when you give the diagnosis to your patien but also later on; - Arrange a combined appointment with both an oncologist and gynaecologist; - Raise awareness of referring patients to an expertise centre; - Healthcare professionals should adress fertility preservation/discuss fertility in emergency treatments (in the field of hematoma oncology, for instance); - Raise awareness of reliable sources of expertise (the AYA4 or NNF website); - Close collaboration between local hospitals and fertility expertise centres;

Dream team

- AYA patients - Ina Beerendonk, Vivianne Tjan-Heijnen, Didi Braat (Gynaecologist Radboud university medical center), Nick Westerhof (Auteur of the book Dansen op een zijden draad), Özlem Baysal (Study Doctor Radboud university medical center),Joyce Roijen (Nurse MUMC+), Wilianne Nelen (Study Doctor Radboud university medical center), Lobke Bastings (Study Doctor Radboud university medical center), Eveliene Manten, Tineke Smilde (Internist Oncologist Jeroen Bosch), Ramon van Eekeren (Surgical Oncologist Rijnstate), Marleen Kets (Clinical geneticist Radboud university medical center).

Information given by doctors The session also suggested that patients have much need for education given by their doctors. They have a need for information not only during the first consultation with their attending physician, but also later on after their initial feelings of anxiety have lowered. Apart from information about the treatment risks and chance of survival, they also find it important to learn how fertility preservation can be optimised. They should also have the opportunity of going through their options at home through the internet and by reading brochures. Although this item can also be discussed through the AYA community, doctors are generally unaware of the existence of this online facility. The NNF website and the AYA4 homepage provide lots of information about fertility problems resulting from cancer treatments.


16.04 Werkkracht by kanker ‫@‏‬ragnavanhummel Kunst is de verbinding te vinden. Kennis, inzicht, vaardigheden en faciliteren. Is kracht Re-turn!

Scientific corner Onderdeel van het programma van SPACE4APart of the SPACE4AYA programme is the Scientific corner, a research group within the Radboud university medical center. The four ladies involved develop treatments and therapies aimed at reducing side effects and increasing tumour-specific effects, especially in sarcomas. This type of cancer has the highest prevalence in the AYA patients’ age group. Which activities exactly do they undertake? Myrella says: “We investigate cell lines from patients. These cell lines (tumour cells) are being kept alive with nutrients, resulting in the division of the tumour cells. The research group tests new medicines and combinations of existing therapies on these cell lines. If the number of tumour cells decreases noticeably, the treatment is then tested on mice, who are injected with tumour cells. Another method is to implant

pieces of tumour (from patients) into mice. The mice are receiving the same treatment/therapy, enabling the research group to evaluate the effects. An important future goal is to give patients tumour-specific treatments in order to prevent general side effects, in contrast with chemotherapy .” Enjoying life When asked if Myrella, Melissa, Amy and Emmy themselves have gotten a different perspective of life or diseases, they answered: “We have become more aware of healthy choices and especially the effects of unhealthy ones. Furthermore, we are more aware of the fact that we should live life to the full, as we realise nothing is for granted. We try to learn through other people’s experiences.”

“Patients really appreciate the fact that they can come to me not only for blood results, but also for personal attention. Healthcare education has moved towards focusing on communication skills, resulting in a greater ability among healthcare professionals to have consultations with their patients about difficult subjects. Colleagues are able to support each other more. All this results in an increasingly human approach to healthcare. It is very important to come back to bad news and to give patients the opportunity to tell their stories. The question is: “How can you enable patients to regain their strength?” We have to provide care tailored to the needs of individual patients, both medically and therapy wise. We should ask our patients: “Who are you, and what do you need?” Rosemarie Jansen, Nursing specialist Radboud university medical center

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16:07 willem wansink ‫@‏‬willemwansink @ragnavanhummel @lucienengelen @ SPACE4AYA Eens. Nog veel werk te verrichten. Kijk in beurs baas, kruip in hoofd werkgever. :)

AYA and late effects During or after cancer treatment the AYA patient can be confronted with unintentional damaging effects of treatment, both physically as well as psychosocially and emotionally. These are so-called ‘late effects’. How do you cope with them? Can you exercise some ‘damage control’ yourself? What do healthcare professionals need to pay attention to? How can they anticipate eventual late effects that may occur, and how do you manage this process? These questions were addressed in the “Late effects’ theme. Among the participants in this session were Jourik Gietema (Internist Oncologist University Medical Center Groningen), study doctors Hink Boer (University Medical Center Groningen) and Niek Westerink (University Medical Center Groningen). In an interview, Judith Prins (Psychologist, AYA Expertise Platform Radboud university medical center) and an AYA patient will focus on the psychosocial effects of cancer and cancer treatments.

Dream team

- AYA patients - Aafke Hopkoop (Isala) - LATER expertise centre Radboud university medical centre - The speakers on this theme

To do

- AYA care should focus on late effects; - Late effects should be addressed in all stages of the patients’ illness; not only if their aim is to recover, but also if they are incurably ill; - Involve general practitioners; - Provide good information about late effects (physical and psychosocial); - Introduce late effects into education and teaching programmes; - Organise proper aftercare; - Start AYA Recovery and Balance groups

Observing and preventing late effects In the ‘Late effects’ session, Jourik Gietema, who works at university medical center Groningen, states that in 2020 4.5% of the Dutch population will be cancer survivors. This group will be made up of children (1%), AYA patients (5%) and elderly people (the rest). The late effects of operations, radiotherapy and chemotherapy can take on many forms, such as the development of a second type of cancer, cardiovascular disease or metabolic disorders. When treatment has finished, there must be a plan to observe or even prevent late effects. For that purpose, Hink Boer (University Medical Center Groningen) has developed a plan for follow-up in the form of an IPhone app with information on lifestyle. Niek Westerink (Uni-

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versity Medical Center Groningen) conducts research into factors which have an impact on late effects, for instance getting enough exercise (even during treatment) and a non-smoking lifestyle. CHRCFTE Clinical psychologist Judith Prins stated that AYA patients preferably cope with their illness on their own, along the process of CHRCFTE. CHRCFTE stands for: Coming to a Halt, Returning, Catching up, Further (Temporary) Effects. Ideas put forward by the audience included organising aftercare and setting up a Recovery and Balance group specifically for young people.


16:55 Yvon ten Brummelhuis@TenbrummelhuisY #Space4AYA, ontzettend inspirerende dag , complimenten, en nu verder in dreamteams# Marikenhuis

“Compliment to all AYA patients” Eveliene Manten, Forerunner AYA Expertise Platform Radboud university medical center/National AYA Platform, is one of the driving spirits behind the organisation of SPACE4AYA. What did she think of the seminar? “It was a day which offered room to all participants. AYA patients and all people involved were brought together, and things started to get on the move. It was inspiring to see how much has been realized in a short amount of time due to collaboration with and involvement of enthusiastic AYA patients under the credo: “Not tomorrow, but today!”. “I am very proud of the fact that you let us into your lives. I would like to compliment all AYA patients on that. By letting us into your lives I mean: what do you need, and what can we do for you without making ourselves more important than we are. You take the lead, and we do as much as we can to offer you help. The collaboration between AYA patients and healthcare professionals is fruitful, enabling us to set up better care for and in consultation with AYA patients. Today AYA has been launched as a brand! Tom van ‘t Hek has laid a foundation for something good!””

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17:13 Remco Hoogendijk@ocmer Inspiratie van #jip leeft voort #leef #space4aya

“There are no taboos, there is no excuse. Now is all that matters. Take action, take action! You have to really listen to what the voices say” AYA battle song ‘Live!” Powered by Jip

Nice finale with Music theatre group Plezant Plezant gave an impressive musical introduction to each of the 4 themes. The central thought of their performance was: “Being together brings you happiness”. Being together lifts you up and encourages you. Tom van ’t Hek says about Plezant: “You made us happy, gave us peace and made us think throughout the day”. 10

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18:47 Annet Bongaerts ‫@‏‬annetbongaerts @SPACE4AYA indrukwekkende dag, veel indringende patientverhalen, belangrijke boodschap luister en kom niet met oplossingen!

Between hell and heaven 17 ‘Cancer, death. Has my life come to an end, even though it has only just begun? Only a year ago I left home to live on my own. I thought I had the world at my feet. I enrolled in the Communication Science programme in Amsterdam and became a member of a students’ society. I was over the moon about this membership, the friends I made and the city I moved to. I was overjoyed when I was asked to move into the home of my students’ society, Heaven 17, halfway through the year. But now I am in hell.

Book launching At the SPACE4AYA seminar, Lara Jongbloets’ book Tussen hel en hemel 17 was presented. What did Lara think of the seminar? “I think it is fantastic and a good thing that SPACE4AYA is such a success. I am grateful I was able and allowed to give assistance to it”. “I am very proud of launching my book and I hope it will contribute to (the improvement of) AYA care. It has been far from easy for me, but at the same time it gives me much satisfaction to finally be able to share my story”.

“There must be more awareness of and recognition and acknowledgement for this group with special needs. It is important for governmental organisations to understand the special attention that needs to be paid to this group and their ability to express their needs. Listening is a word that was repeated over and over again today! And… money must be made available”. Suzanne Kaal, Internist Oncologist Radboud university medical center

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ON TO SPACE 4 AYA 2015! Please send your ideas to Eveliene Manten via Eveliene.Manten-Horst@radboudumc.nl SPACE4AYA has been made possible by the selfless efforts of many people. Visit the website for all efforts and sponsoring: www.Space4aya.nl We’d like to thank all AYA patients, speakers, debaters, and all other people who have contributed to the 2014 SPACE4AYA seminar!

Colophon Concept development

Editing

Eveliene Manten-Horst (Radboud university medical centre)

Petra de Vries Anoeska van Osch Fleur van de Wagt

Coordination & Final editing Marloes Ponsteen Photography Rudi Bexkens

Felix van Dam Winneke de Groot Design Felix van Dam Winneke de Groot

National AYA platform Radboud university medical centre, route 452 AYA Secretariat, PO Box 9101, 6500 HB Nijmegen Secretariat 024-3613457 Facebook.com/aya4net http://www.aya4net.nl

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