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Newsletter - October 2017 

Successful Meeting in Madrid 
 
On the last 27 and 28 October, the 3th Board of the Network took place in Madrid, with the participation of centers of the Network from Italy, France, United Kingdom, Portugal, Sweden, Lithuania, Poland, Germany and  Netherlands.

The meeting was hosted by the La Paz University Hospital, and the inagural presentation was attended by  Mrs. Laura Marín – Representative of Spain in the Board of States in the EU-MSSSI, Dr. Paloma Jara. Coordinator of the Network, Dr. José María Muñoz y Ramón- Medical Director - La Paz University Hospital and Dr. Ignacio Zapardiel – sub-Scientific Director – Institute for Health Research- IdiPAZ.

In parallel sessions, the working groups have met to update the tasks and complete the necessary activities to meet the objectives of the network. All centers presentated the internal activities carried out, as well as questions and suggestions about the future actions of Transplantchild.

Plenary sessions were presented on relevant topics of the network: IT-Platforms, ERNs Governance, TransplantChild Subcommittees: Healthcare, Ethics, Call for ERNs new members, Registries Collaborative Platforms and Member States relationships and Crossborder issues.

Finally, the general conclusions of the meeting have been presented, highlighting the fantastic chance to all the renowned great professionals and hospitals across Europe devoted to paediatric transplant (of all types) to work and develop a joint job to improve the health care of our patients. The next Board of the Network will be on March-April 2018.

Thanks in advance to all meeting attendees for their involvement and dedication.


 
The TransplantChild Team
 
News

'Health in the digital society' conference, Tallinn, 17 October 2017

 

Message from Vytenis Andriukaitis, European Commissioner for Health and Food Safety

EU citizens clearly care about the innovation and digitisation of health care. We all see the potential of digital solutions in the prevention and management of chronic diseases and in keeping a healthy lifestyle. That is why the Commission is committed to overcoming the current barriers to the free movement of patients and data.

More Information

RD-Action: "Recommended Practices for Data Standardisation in the Context of the operation of European Reference Networks"

 

This document originated as an output of the Workshop organised by RD-ACTION and co-hosted by DG SANTE, which took place in Brussels on 25th and 26th April 2017. An initial draft was shared with the topicspecific experts who attended the workshop, with a deadline for feedback of 31st July. This led to preparation of an advanced draft, which was shared with the full group of workshop participants on 8th August. Feedback was received up until 22nd September and was used to refine and generate this version of the document.

More information

ERNs 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-Clinical Patient Management System (CPMS) Webinar schedule for November 2017

 

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: 
  • 14-11-2017 @ 14:00 CET  Meeting Management & Video Technology & How to use the Pedigree Tool.
  • 21-11-2017 @ 14:00 CET  How can external (guest) health professionals interact with CPMS & How can a Panel Lead be assigned to lead a Panel request submitted by Guest HP?
  • 28-11-2017 @ 14:00 CET  Multi-level role-based access rights.
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.
Next Events
07,14,21,23 NOVEMBER - 04,12 DECEMBER 2017

First Edition of Pediatric Transplantation training course - TransplantChild, La Paz University Hospital

7, 14, 21, 23 November - 04,12 December of 2017 - Madrid, Spain
06-07 DECEMBER 2017

RD-Action: Workshop on clinical practice guidelines

6-7th December of 2017 - Rome, Italy
07-10 MARCH 2018
RE(ACT) Congress: International Congress On Research Of Rare And Orphan Diseases
Bologna, Italy
18-21 MARCH 2018
44th Annual Meeting of the European Society for Blood and Marrow Transplantation
18th to 21st March 2018 (Lisbon, Portugal)
10-12 MAY 2018
European Conference on Rare Diseases and Orphan Products
From 10th to 12th May 2018 (Messe Wien Congress Center, Vienna, Austria.)
 

www.transplantchild.com
TRANSPLANTCHILD - European Reference Network on Pediatric Transplantation
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