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Newsletter #25

7th Board of the Network: Thanks for coming!



We would like to thank all of you for your attendance and participation in this last Board of the Network in Padova on November 11th and 12th. In the next issue of this Newsletter we will go through all the news and communications regarding the event.
News


The TransplantChild Research Working Group has designed a leaflet with the objective of informing patients about the benefits of research in Paediatrc Transplantation. The document answers to the following questions:
  • Why should we investigate in transplantation?
  • Why research with adults cannot necessarily be extrapolated to children?
  • How can research improve PT?
  • How is TransplantChild working to support PT research?
  • TransplantChild ongoing research projects.
  • Next Steps in research on PT.
View the leaflet in our website

Official Welcome to our Affiliated Partners

 
We are pleased to welcome our very first affiliates. Seven HealthCare Providers from different countries will be collaborating with the network activities as Affiliated Partners. We are looking forward to work together with these new hospitals associated to our network.
 

2019 call for membership to the existing ERNs close to deadline

 
The first call for new members to join existing 24 European Reference Networks (ERNs) is open until November 30th 2019.

The membership application process involves several steps:

  • Review the information that is included on the Commission webpage related to the ERNs and the applicable legislation.
  • Contact your national representatives in the ERN Board of Member States. They will provide you with more specific information on the national endorsement process.
  • Fill in the application and self-assessment in the online tool.
  • Include all required documents that are specified in the online tool and described in the assessment manual.
More information & application form

United Nations included Rare Diseases on Universal Health Coverage



On September 23rd, 2019, the 193 United Nations (UN) Member States adopted a political declaration on Universal Health Coverage (UHC) that includes the mention of Rare Diseases. This marks a significant milestone for the community, as it is the first time that Rare Diseases have been included.
 
Check the EURORDIS statement

300 million Rare Diseases patients

 

A new scientific article by Orphanet, EURORDIS and Orphanet Ireland studied the current prevalence of Rare Diseases worldwide. According to this research, Rare Diseases affect, at any point, between 3.5% and 5.9% of the world population. This results in an estimation of 300 million patients. The analysis shows that there are over 6,000 clinically defined rare diseases. From them, 72% are genetic and 70% start during childhood.
 
Read the full article
ERN Activities


“Hot topics in paediatric transplantation"
(solid organ and haematopoietic stem cell transplantation)

Non-pharmacological strategies to induce tolerance
Clinical case - Multivisceral transplant

Latest Webinars

 
 All Groups 
 05 09 2019 - TransplantChild All Groups Update
 
 Healthcare Working Group 
 24 10 2019 - Program of clinical audits in paediatric
                      transplantation

 04 04 2019 - CPMS TransplantChild activity
 
 Clinical Practice Guidelines Working Group 
 26 09 2019 - Data extraction

 07 08 2019 - Screening by full text
 
 Research Working Group 
 07 03 2019 - Promoted research: pitfalls and
                      opportunities in the whole European
                      research scenario

 18 10 2018 - DG Sante-promoted mapping of
                      Research Capabilities of ERNs.
                      TransplantChild situation
 
 Education and Training Working Group 
 24 04 2019 - Action and annual plan

 15 02 2019 - How to design EaT activities from a
                      transversal approach, Hospital La Paz
                      experience
 
 Networking & Knowledge Working Group 
 13 06 2019 - Human capital

 22 03 2019 - Knowledge sharing
 
 Quality and Safety Working Group
 10 10 2019 - Participation in the DG SANTE WG on
                      Continuous Monitoring

 11 04 2019 - Perceived quality by patients, families
                      and relatives
 
 ERN IT Platforms and Registry Pills 
 14 11 2019 - Registry General Considerations

 31 10 2019 - PaEdiatric Transplantation European
                      Registry
 
 Research Funding Office Pills 
 14 08 2019 - Next H2020 Research Calls focused on
                      ERNS

 05 06 2019 - Next Research European Calls
 
 
Webinar Calendar
Available webinars
Upcoming Events

Related Events from EJP-RD


 
26 – 29 November 2019, University of Maastricht, The Netherlands

International Congress Of Research On Rare And Orphan Diseases
11 – 14 March 2020, Berlin, Germany
 

Next Webinars 

 
November
Date  
Nov 28 CPG WG meeting
Dec 05 Networking/Knowledge management WG meeting
Dec 12 E-learning sessions

 
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