PanCareSurFup Bulletin: Updates from project partners, 1st Issue

 

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PanCareSurFup Bulletin

First Issue

 

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the 1st Issue of the PanCareSurFup Bulletin

 

 

We are delighted to present to you the first regular bulletin of PanCareSurFup.

 

In this first edition of the project’s Bulletin, the dissemination team interviews the Project Coordinator, Dr. Lars Hjorth from Lund University in Sweden.

We also provide a few updates on the most recent and interesting events and activities organised by project partners.

 

Please widely disseminate to interested colleagues.

 

 

ENCCA Interview with Riccardo Haupt and Lars Hjorth on how to improve the lives of long-term survivors

  • Riccardo Haupt and Lars Hjorth: Improving the lives of long-term survivors Enhancing quality-of-life of the increasing number of survivors of childhood and
    adolescent cancer is one of the main goals of ENCCA and a related EU-funded
    project, PanCareSurFup. A particular advantage of both ENCCA and
    PanCareSurFup is that as rare cancers are the focus, the added-value of networking and sharing information and resources is a given. Many of the partners and experts are already work together and this ensures greater efficiency and success for these two interlinked projects. However, many of the new features of both projects have just started, such as the ‘survivorship passport’ and sustaining these initiatives in the long-term is a must.
    The project Oncovideos – Developing Vocational Skills in Oncology through e-Learning, in coordination with ECCO, is a precious cross-discipline online educational resource for European young oncologists looking for a practice oriented online training.

For child cancer survivors, treatment comes at a cost (CBS News)

There are almost 400,000 survivors of childhood cancer in the United States and most are expected to live until adulthood. But toxic treatment comes with a price, including serious medical problems for most patients years down the road. Now the most comprehensive study of its kind has found that many problems go undetected.

At age 7, Marnie Golden was diagnosed with Non-Hodgkins lymphoma.

Listen to the interview and read article here: http://www.cbsnews.com/8301-18563_162-57589497/for-child-cancer-survivors-tr

Childhood Cancer Survivors take part in Bike Ride through Italian Countryside

On the occasion of a professional bike race involving the top cyclists in Italy, ‘Granfondo fizik’, a special race for paediatric survivors took place on 06 May 2012 in the beautiful Marostica, an hour away from Venice. As part of the dissemination activities of the EU-funded Seventh Framework Programme (FP7) project PanCareSurFup (PanCare Childhood and Adolescent Cancer Survivor Care and Follow-Up Studies – www.pancaresurfup.eu), ‘The Race of Brave Bikers’ saw the participation of 30 young cancer survivors from across Europe, on a special 10km route and even longer for several participants. The event has been led by project dissemination leader Prof. Momcilo Jankovic and sponsorship was led by NEAR (an Italian company dealing with corporate social responsibility – www.neargroup.it)   and Fi’zi:k (an Italian company specialised in suppliers for professional cyclists – http://www.fizik.it/).

 

The event aimed to raise awareness of the increasing number of paediatric cancer survivors in Europe, due to successful cure rates. The race involved several young people who have been able to overcome cancer and, today, live a normal life. The race demonstrated not only their immense courage, but also on the importance of optimum quality-of-life for the many survivors, and the need to promote research studies into late effects of the complex paediatric cancer treatment.

 

On the previous day, 05 May, a roundtable was organised, with experts and doctors from leading European hospitals explaining their role in the project to several stakeholders including survivors, to promote the message that every European childhood cancer survivor deserves access to the best possible care and better long-term health.

 

More information:

PanCare SurFup project

Race of the Brave Bikers (in Italian)

More photos

Report of the first Irish Conference on Survivorship after Cancer during Childhood and Adolescence

This conference was held on 26 November, 2011 in the Croke Park Conference Centre, Dublin from 10 am to 4 pm. It was organised by the Boyne Research Institute, Drogheda, Ireland, in association with PanCareSurFup‘s Work Package 7 (WP7), and the Irish Cancer Society. Co-sponsoring organisations were the Children‘s Medical & Research Foundation of Our Lady‘s Children‘s Hospital, Crumlin, Dublin, Novartis Ireland and Bristol-Myers Squibb Ireland.
The conference targeted survivors and their families and also, specialists, general practitioners, nurses and other health professionals. Registration was free. A total of 111 guests attended; about 70% were survivors and family members.
Speakers were primarily drawn from PanCareSurFup and included Lars Hjorth, Mike Hawkins, Momcilo Jankovic, Elvira van Dalen and Gill Levitt. Other speakers included Alex Brownsdon, Harry Comber, director of the Irish Cancer Registry, Michael Capra, paediatric oncologist at Our Lady‘s Children‘s Hospital, Crumlin, John McCormack, CEO of the Irish Cancer Society, and representatives from CanTeen Ireland, Barretstown Castle and ICCCPO (Gerlind Bode).
The keynote speaker was Irish MEP Nessa Childers, who reminded survivors not to even think about smoking, and to take control of their health.
A survey of those who attended showed a high level of satisfaction with the conference, the speakers and the arrangements. Most rated all elements on the survey as „Excellent“. BRI staff are currently analysing the data from the surveys. A final report will be placed on the conference website – www.ccs2011.ie. The website carries the full programme and the presentations from each speaker . Numerous photos from the event can be viewed on http://www.facebook.com/BoyneResearch, as well as on the conference website.

By Julie Byrne

Nov. 26, 2011 – Irish Conference on Survivorship after Cancer during Childhood and Adolescence

The Boyne Research Institute, Drogheda, Ireland in association with the Irish Cancer Society will host the first Irish Conference on Survivorship after Cancer during Childhood and Adolescence.

This 1-day conference will take place in the Croke Park Conference Centre, Dublin, on Saturday, November 26th, 2011.

Registration opens on 1 September, 2011. For more information visit www.ccs2011.ie.