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Newsletter - September 2017 

Dear Members, 
 
After the summer break, we are pleased to present you several activities of ERN-TransplantChild in this beginning of autumn, including Working Groups, Events, and News related with ERNs. Also we take this opportunity to remember our next TransplantChild Board Meeting on Friday 27th and Saturday 28th of October 2017 in Madrid, Spain. 
 
Best regards,

The TransplantChild Team
 
Upcoming Events
Date:     Friday and Saturday, 27th and 28th of October 2017
Time:    10:30-17:30 H  (Friday 27th)
              9:00 -13:00 H  (Saturday 28th)

Venue:  Hospital Universitario La Paz de Madrid, Spain.
News

European Day for Organ Donation and Transplantation (8 September 2017)

 

In the last European Commission e-News (08/09/2017) of Health and Food Safety Directorate General, the Commissioner Mr. Vytenis Andriukaitis sent a message tittled: "Bringing back hope to patients on waiting lists all over Europe".  The commissioner remarks about the potential of ERNs, in particular TransplantChild as promising new initiative: European Reference Networks.

More information

EU Consultation on eHealth

 

The European Commission is launching a open consultation on digital transformation of health and care to investigate the need for policy measures that will promote digital innovation for better health and care in Europe.  Citizens, patient organisations, health and care professionals, public authorities, researchers, industries, investors and users of digital health tools are invited to respond to the consultation by 12 October 2017.

More Information

ERNs new videos - TransplantChild:"Story of Paula"

 

The European Commission has released four new video testimonials from rare diseases patients, explaining how European Reference Networks for Rare Diseases help them.  They chosen three ERNs to make a video about patients affected by the conditions included under the ERNs and one of them was a liver transplanted girl from Hospital la Paz: Story of Paula.

Watch the videos here

 
ERN Activities


ERN-TransplantChild collaboration platform is now available

 

The ERN-TransplantChild collaboration platform is now available. Any ERN Member can request access to the platform. To make it easier, you can review a quick guide here
How to participate?
  • Registry with EU Login at: https://webgate.ec.europa.eu/ern/
  • Request access in to ERN-TransplantChild
  • Participate in the forums, registry your activity in the network, review the events, or check the documents in the library


ERN-Clinical Patient Management System (CPMS) Testing

 

Members of the ERN-TransplantChild were invited by OpenApp (Creators of CPMS platform) to participate in the training activities. The schedule of training sessions is described below: 
  • 19th Sep - How to Use the CPMS for Collaboration (a rerun for those that missed it last week). 
  • 3rd Oct - How to Use the CPMS if you are an ERN Co-ordinator
  • 10th Oct - How to Use the CPMS if you are an Invited Panel Member/Expert Contributor
  • 17th Oct - How to Use the CPMS if you are a ERN Guest Contributor
If you want to participate in the next sessions please This email address is being protected from spambots. You need JavaScript enabled to view it.
Working Groups (WG) Activities IN PROGRESS
WG: Healthcare

The last month the Healthcare Working Group has launched their Survey to define the map of resources into the network. The survey will be closed in September 30/2017

WG: Research
The Research Survey is available
The aim of this survey is to compile the current situation of research initiatives and interest at the Hospitals that are members of TransplantChild, and their related academics institutions. 

 

COST Actions 2017 Proposal 
In the last call, TransplantChild presented the proposal called PRICISION: "European Network on Paediatric transplantation Risk stratification by Immunological biomarkers-driven Clinical ImmunoSuppressIon decisIONs. The Aim of this Action is to establish a European-led multidisciplinary network of researchers collaborating in the validation and standardization of immune biomarkers for personalized immunosuppressive therapy in paediatric transplantation. 
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Upcoming Events
10 OCTOBER 2017
How to Use the CPMS if you are an Invited Panel Member/Expert Contributor
Webex Meeting - 5PM (CET) - OpenApp
11 OCTOBER 2017
3RD Meeting of ERN Coordinators Group (ECG)
Brussels, Belgium - EUROPEAN COMMISSION
27-28 OCTOBER 2017
ERN TRANSPLANTCHILD Meeting - Board of the Network
Madrid, Spain