Copy
Latest News from & for ExPO-r-Net partners
January-February 2017 edition
View this email in your browser

ERN PaedCan Approved

The application for a paediatric oncology European Reference Network (ERN PaedCan) submitted to the European Commission has been approved. The ERN links pre-existing reference centres inherent to the established European Clinical Trial Groups (ECTGs), which will contribute high-level diagnostic and medical expertise to provide cross-border best care to rare childhood cancer populations.

Together with the European Society for Paediatric Oncology (SIOPE, www.siope.eu) the goal of the ERN PaedCan is to improve outcomes of childhood cancer by reducing the current inequalities in different member states by establishing mechanisms to facilitate movement of information, guidelines and knowledge rather than patients.  Over the past years, ExPO-r-Net partners managed to consolidate the preconditions for this large multinational network, which will represent a clear framework for healthcare providers across Europe.

The European Committee of Childhood Cancer International (CCI) – the organisation representing cancer parents, patients and survivors – has been working closely with project partners also in this regards, and will be also involved in the ERN PaedCan implementation.

JARC – Facilitating the ERN PaedCan


The work performed in the framework of ExPO-r-Net has also been integrated in the EU Joint Action on Rare Cancers (JARC), launched in November 2016. The objective of this initiative of the EU and Member States is to help ensure the appropriate roll out and implementation of the European Reference Networks – including therefore the ERN PaedCan as well as to address the lack of systematic inclusion of rare cancers in national cancer plans. The JARC is an important opportunity to advance towards the key objectives of the SIOPE Strategic Plan and to build on achievements of ExPO-r-Net. SIOPE was selected as the leader of the JARC ‘Childhood Cancers’ Work Package, which focuses on topics such as making recommendations to solve bottlenecks and barriers in accessibility to essential medicines and innovative therapies; identifying solutions for delivering optimal care and research for young people with extremely rare cancers; and recommendations on models of healthcare for survivors.

Project Extended


The ExPO-r-Net project has been officially extended until August 31st 2017. The last report (RP3 report) is therefore covering the period of 01.03.2016-31.08.2017. 
ExPO-r-Net will therefore continue for a few more months and project partners will have the opportunity to finalize all the different preparatory work, discussing it at the next meetings in 2017 (see below). 

ExPO-r-Net profiled


ECCO2017 in Amsterdam

The ECCO2017 Congress, 28 – 30 Jan in Amsterdam, dedicated a policy session to cross-border cancer care with specific focus on the European Reference Networks. Prof. Ruth Ladenstein was invited to share the lessons learned from the ExPO-r-Net experience and the vision for the ERN PaedCan. It was an important opportunity to present these achievements to policy makers from the European Parliament and the European Commission and interact with representatives of the adult Rare Cancers ERN in an interactive panel discussion. Prof. Ladenstein emphasised the long-standing cooperation in the paediatric cancer sector in Europe involving professionals, parents, patients and survivors and building the ERN PaedCan in a truly “bottom–up” process. Most importantly, the vision and the model of the ERN PaedCan was presented as that of Optimising cross-border cancer care by emphasising virtual tumour boards and supporting selected procedures abroad for those who need them.

SIOP 2016 - Joint Presentation with the European Committee of CCI

ExPO-r-Net was presented in the CCI session at the SIOP International Congress in Dublin,19-22 October 2016, by the SIOPE Secretariat and CCI Europe members in what is truly representative of the cooperation between professionals and parents in the project. It was an important opportunity to raise awareness for the ERN PaedCan among parents and patients who will use the services. This is also an important building block for the project visibility.

Other Promotional Initiatives

In the past months, ExPO-r-Net was also described and profiled at different occasions: at the MAC–CRUK–SIOPE Conference ‘Review of the EU Paediatric Medicines Regulation – Let’s do more for children with cancer’ (September 7th, 2016, European Parliament , Brussels, BE); at the RD-ACTION Workshop ‘Exchanging data for virtual care within the ERN Framework’ (28-29 September 2016, Brussels, BE); at the 9th International conference and 1st Global AYA Cancer Congress (December 5-7, 2016, Edinburgh, UK); and at the SIOPE Society Day  & European Cancer Congress (27 - 30 January 2017, Amsterdam, NL). Last September the project was presented at the Opening Plenary of the Gastein Health Forum 2016 as one of the finalists of the European Health Award 2016: ExPO-r-NeT scored very well in the evaluation, and it was featured on the European Health Forum Gastein website and press release. The official launch of all approved ERNs will take place on 9-10 March 2017 in Vilnius, Lithuania.

Upcoming Meetings & Events

 

Project Acknowledgement

 
Please remember that ExPO-r-Net publications, posters, presentations, web pages and should:
  1. Display the following EU logo (available here)
  2. Display the ExPO-r-Net logo (available here)
  3. Include the following formula:
This publication arises from the project ExPO-r-Net which has received funding from the European Union in the framework of the Health Programme (2008-2013), grant agreement nr. 2013 12 07. The content represents the views of the author and is his sole responsibility and it can in no way be taken to reflect the views of European Union bodies. The European Commission and/or Chafea do not accept responsibility for any use that may be made of the information it contains.

Changes in Contact/Organisation

 
Dear ExPO-r-Net partners, please inform us about any news from your Work Package, as well as about any change in your contact / organisation details.

Please do not hesitate to widely disseminate to interested colleagues

 
Contact expornet@ccri.at or office@siope.eu for more information.

Avenue E. Mounier 83
B-1200 Brussels
Belgium
Tel: +32 2 775 02 12
Fax: +32 2 775 02 00
www.siope.eu
 
This publication arises from the project ExPO-r-Net which has received funding from the European Union in the framework of the Health Programme (2008-2013), grant agreement nr. 2013 12 07. The content represents the views of the author and is his sole responsibility and it can in no way be taken to reflect the views of European Union bodies. The European Commission and/or Chafea do not accept responsibility for any use that may be made of the information it contains.
Copyright © 2017 SIOPE, the European Society for Paediatric Oncology, All rights reserved.


Want to change how you receive these emails?
You can update your preferences or unsubscribe from this list