FIT FOR THE FUTURE - acreditar.org.ptSubway The Lisbon subway is modern, reliable and the quickest way to travel around the capital. The subway is open from 6:30am until 1:00am and

FIT FOR THE FUTURE

9th CCI EUROPE REGIONAL CONFERENCE

FIT FOR THE FUTURE

On behalf of the Board of Trustees of Childhood Cancer International, I am honored to welcome you to Lisbon and the CCI Europe Conference 2018! Regarded as a “city of immigrants” Lisbon is welcoming to people of the world. What a perfect place to host the CCI Europe Conference as we bring together parents of children with cancer, survivors, families and childhood cancer leaders from many countries - all bound together by our common commitment to advance cure, transform care and instill hope for children and families aff ected by childhood cancer.

As we focus on the theme “Fit for the Future” we must all remind ourselves that becoming physically fi t requires dedication and time to overcome what can often seem like insurmountable obstacles to get “in shape.” Similarly, the childhood cancer journey can often feel like it is an uphill mountain of insurmountable obstacles. Yet through dedication and steady consistent progress and walking and running on this path together, we will identify the obstacles and remind ourselves that, “When faced with a mountain, we will not quit! We will keep striving until we climb over, fi nd a pass through, tunnel underneath or simply stay and turn the mountain into a gold mine, with God’s help.”

Looking forward to 3 days of overcoming obstacles and becoming “more fi t” for the future together.

Ruth Hoff man MPHPresident, CCI

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the EUROPEAN TASK FORCE

… the CCI Europe Regional Committee, its Advisors and project manager, warmly welcomes you at the 9th CCI Europe Regional Conference in one of Europe’s most beautiful cities - in Lisbon. We hope you enjoy the program of the upcoming days and wish you productive sessions, interesting presentations, fruitful exchanges, enriching get-togethers and strengthening impressions.

Anita KienesbergerAimilia TsirouAnne GoeresCarina SchneiderFrédéric ArnoldGerlind BodeHolly WattwilJaap den HartoghLejla KamericLudmila HurajovaLuisa BassetMarianne Naafs-WilstraNicole ScobiePeter LackStephanie Schremmer

Let’s get fit[ter] for the future!

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Childhood Cancer International

Lisbon was, many centuries ago, a place of departure. From here, the Portuguese discovered new paths to new worlds; it was here that the word “globalization” was pronounced for the first time. It was with courage and fearlessness that we united Europe to America or India and crossed seas that the world did not know of. Lisbon was, at that time, the centre of a certain world.

During the coming days we will talk about paediatric oncology. For the next few days Lisbon will be, once again, the centre of a certain world from where new paths will emerge. No longer oceans or unknown places, but collaboration, sharing experience, proposals to solve, or at least mitigate the problem that binds us all: the children and young people with cancer.

As president of Acreditar, the Portuguese childhood cancer association, I am delighted to greet all those who have come from across Europe – the fearless navigators of today: survivors, parents, professionals, volunteers, health technicians. May the coming days prove fruitful to all.Welcome!

João BragançaPresident AcreditarPortuguese Association of Parents and Friends of Children with Cancer

Acreditar

PROGRAM

Friday

12h30

Registration14h00

Welcome

CCI Europe Regional Committee [ CCI-E ReC ]moderators | Luisa Basset, Anita Kienesberger

14h15

Interactive session

Speed Datingmoderators | Nicole Scobie, Peter Lack

15h00

16h30

17h00

17h10

Our key success factors

Margarida CruzGeneral Manager Acreditar, Portugal

moderators | Ludmila Hurajova, Holly Wattwil

Introduction Childhood Cancer International [ CCI ]

Ruth Hoffman President CCI /American Childhood Cancer Organization [ ACCO ]

Opening CCI Europe Regional Conference

CCI Europe Regional Committee & CCI-E Survivorsmoderators | Luisa Basset, Anita Kienesberger

Coffee Break

Opening ACREDITAR

João Bragança President Acreditar, Portugal


growing your organizationCCI networking opportunity others

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17h40

Improving outcomes for children with cancer through concentration of care and research in a national pediatric oncology center

Marianne Naafs-Wilstra Childhood Cancer Parent Organisation, Netherlands [ VOKK ]


18h10

Circulating break

17h55

The benefits of family-centered care for perceived self-efficacy and psychological wellbeing in parents of children with cancer

Ágata SalvadorCICPSI - Research center for psychological science, Portugal


18h20

Parallel sessionsERN PaedCan national contact points meeting

CCI Europe Regional Committee [ CCI-E ReC ]moderators | Luisa Basset, Anita Kienesberger

20h00

Dinner on-site for All

Saturday

18h30

Parallel sessionsSocial activity for Survivors only

sponsored by ACREDITAR

17h20

Data Base protection

Daniel ReisPLMJ Advocates, Portugal


europe and beyond during treatment after treatment CCI

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09h00

Immunotherapy in children with cancer - hype or hope?

Martin SchrappePresident SIOPE, Germany

moderators | Luisa Basset, Lejla Kameric

09h20

Common avenues for better care: A brief update from SIOP Europe



09h30

Cancer with Humour

Marine AntunesWriter, Portugal


09h50

Unite2Cure / Paediatric Regulation

Anne GoeresCCI-E ReC / Unite2Cure / Fondatioun Kriibskrank Kanner, Luxembourg

Nicole ScobieCCI-E ReC / CCI / Unite2Cure / Zoé4Life, Switzerland


10h10

ERN PaedCan - European Reference Network for Paediatric Oncology



11h15

PanCare - Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer

Jaap den HartoghCCI-E ReC / CCI-E Survivors / VOKK, Netherlands

moderators | Anne Goeres, Ludmila Hurajova

11h30

Education opportunities for childhood cancer support groups - EUPATI, EURORDIS summer school, ESO masterclass

Claas Röhl EUPATI Austria / NF Children, Austria

Ariane Weinman EURORDIS, France

Zuzana Tomasikova CCI-E Survivors / Childhood Cancer Switzerland

Nicole ScobieCCI-E ReC / CCI / Unite2Cure / Zoé4Life, Switzerland


12h00

Collaboration between pharma companies and childhood cancer support groups

Mary UhlenhoppShire, Switzerland


12h30

Lunch

10h30

Coffee Break11h00

EU-funded project JARC - Joint action on rare cancers

Olga KozhaevaSIOPE office, Brussels, Belgium


12h15

Q&A

10h20

Collaborating among ERNs ERN GENTURIS - European Reference Network on rare genetic tumour risk syndromes

Claas RöhlePAG representative ERN GENTURIS / EUPATI Austria / NF Children, Austria


during treatment europe and beyond growing your organizationeurope and beyond others

14h00

Statistics - What are the facts?

Nicole Scobie CCI-E ReC / CCI / Unite2Cure / Zoé4Life, Switzerland


moderators | Luisa Basset, Anita Kienesberger

14h15

Q&A14h20

Precision medicine

István PetákOncompass, Hungary


15h15

Coffee Break

16h00

Research on the psychosocial aspects of pediatric cancer: Future paths and challenges for corporate knowledge building and intervention

Susana Caires Universidade do Minho, Portugal

moderators | Carina Schneider, Jaap den Hartogh

15h00

Q&A

15h45

Neuropsychological support and rehabilitation for survivors of childhood cancer with neurocognitive late-effects

Sophie SchmitFondatioun Kriibskrank Kanner, Luxembourg

moderators | Carina Schneider, Jaap den Hartogh

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16h15

Interactive sessionWhat exactly does being a childhood cancer support group mean for your organization? What does being a patient advocate mean to you? What do you want to achieve / do better? How can you get there?

CCI Europe Regional Committeemoderators | Carina Schneider, Stephanie Schremmer

18h30

Parallel sessionsSocial activity for all others than Survivorssponsored by ACREDITAR

17h30

Parallel sessionsSurvivors only sessionmoderators | Carina Schneider

17h15

GROUP PICTURE

20h00

Dinner off-site for Allsponsored by ACREDITAR

growing your organization during treatment europe and beyondothers after treatment growing your organization survivors only

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Sunday

09h00

An experience of an art-therapy group for parents of a child suffering of cancer or a rare life threatening disease

Frédérique DegandFondatioun Kriibskrank Kanner, Luxembourg


09h15

Dreaming with Survivors

Rita VelosoSurvivor, Acreditar Portugal


09h30

Survivors’ projects of the Childrens’ Eye Cancer Foundation Germany, KAKS

Hans EhlersChildrens’ Eye Cancer Foundation Germany, KAKS


09h45

CCI-E Survivors | Conclusions and outlook

CCI-E Survivorsmoderators | Ludmila Hurajova, Holly Wattwil

10h30

Coffee break11h00

Interactive sessionThe future of CCI Europe

CCI Europe Regional Committee moderators | Peter Lack, Nicole Scobie

12h00

Closing

CCI Europe Regional Committeemoderators | Luisa Basset, Anita Kienesberger

13h00

Lunch

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Social Program Acreditar

18h30

Pick-up at the hotel for city tour

Survivors only!20h00

Dinner on-site for All21h00

After dinner outing for the Survivors

organized by the local survivors group Barnabés

18h30

Pick-up at the hotel for the city bus tour &drop off at the restaurant at 20h00

19h15

Pick-up at the hotel of the survivors group & drop off at the restaurant at 20h00

20h00

Welcome drink and dinner for All

Restaurant Espelho d’Água, Lisbon 23h00

Return to the hotel by bus

Make your own program

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Transports

By AirLisbon airport, also known as Portela Airport, is located 7 Km from de city center, it is the main international gateway to Portugal and a major European hub.Lisbon - Portela Airport Phone | (+351) 218 413 500ANA - Aeroportos de Portugal, SA is the Portuguese airport authority and provides departure and arrival information on www.ana.pt .

TaxisTaxis are usually cream colored, although there are still some painted black with a green roof in the traditional Portuguese style. The fare is shown on the taximeter. If you call for a taxi, you have to pay an extra 0.80 euros. There is an extra charge of 1.60 euros for luggage, regardless of weight or number of pieces. Carrycots, pushchairs, wheelchairs and walking aids are carried free of charge.Taxis in LisbonRádioTáxis | (+351) 21 793 27 56 | (+351) 21 811 90 00 Teletáxis | (+351) 21 811 11 00

SubwayThe Lisbon subway is modern, reliable and the quickest way to travel around the capital. The subway is open from 6:30am until 1:00am and there is a train service every 6-9 minutes. The subway is the recommended way to travel from the airport to central Lisbon and to travel any distance around Lisbon.Tickets are purchased from metro stations, either from the ticket offi ces or from ticket machines.

TramsTrams are the ideal means to explore some of the most interesting spots of Lisbon’s historical and architectural heritage, or simply to tour the city.The most widely known is Tram no. 28 that runs from Martim Moniz to Campo de Ourique. Although you can hop on at any point, the route starts in the historical center, Largo Martim Moniz, heading to the Graça quarter and continuing to the Church of São Vicente de Fora. It then heads to Alfama, past some of mediaeval Lisbon’s most picturesque streets and squares.

ShopsTraditionally, shops are open from Monday to Friday, from 9 a.m. or 10 a.m. to 7 p.m. Some close for lunch from 1 p.m. to 3 p.m. On Saturdays from January to November, shops generally close at 1 p.m. though in city centers some are open in the afternoon. There are plenty of shopping centers inside and outside the city that are usually open from 10 a.m. to midnight every day of the week. They generally have stores with the main international brands. However, traditional shops with Portuguese products can be found particularly in the streets of the older neighborhoods of Lisbon.

UsefulInformation Pharmacies

In general, pharmacies are open on weekdays between 9am and 7pm (some close for lunch from 1 to 3 p.m.) and on Saturdays between 9am and 1pm. They display an illuminated green cross outside when open at night. All of them have information posted on the door indicating the nearest pharmacies that are open at night.

Health

National Emergency Number | 112

Police

PSP/ Lisbon Metropolitan Police Command: 21 765 42 42Esquadra de Turismo / Lisbon Tourism Police Station: 21 342 16 23

Monuments, Museums and points of interest

Lisbon has several Museums and Monuments worth seeing with a rich cultural heritage that continues to grow every day. For further information we recommend to visit the Lisbon offi cial site www.visitlisboa.com

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Hotel Real PalácioR. Tomás Ribeiro 115

El Corte InglêsAv. António Augusto de Aguiar

Calouste Gulbenkian FoundationAv. de Berna 45 A

PICOAS

S. SEBASTIÃO

PRAÇA DE ESPANHA

ACREDITARR. Prof. Lima Basto 73

HOTEL

Notes Create your own sardinha

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REGIÃO SULRua Prof. Lima Basto, 73 1070-210 LisboaTelefone: (+351) 21 722 11 50Fax: (+351) 21 722 11 51E-mail: [email protected]

REGIÃO CENTRORua Camilo Pessanha, 23000-600 CoimbraTelefone: (+351) 239 482 027Telemóvel: (+351) 91 230 49 83Fax: (+351) 239 482 386E-mail: [email protected]

REGIÃO NORTERua Académico Futebol Clube, 3644200-602 PortoTelefone: (+351) 22 548 04 05Telemóvel: (+351) 91 689 72 26Fax: (+351) 22 548 04 05E-mail: [email protected]

REGIÃO DA MADEIRAAv. Luís de Camões, Complexo Habitacional do Hospital, bloco 3, r/c Esq. 9000-168 FunchalTelefone: (+351) 291 742 627Fax: (+351) 291 742 627E-mail: [email protected]

Hotel Real Palácio

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Documents

FIT FOR THE FUTURE - acreditar.org.ptSubway The Lisbon subway is modern, reliable and the quickest way to travel around the capital. The subway is open from 6:30am until 1:00am and