Endo-ERN Newsletter April 2018 ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏
 
Newsletter April 2018
 
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General Assembly 2019
The Endo-ERN General Assembly will be held on the 12th of March, 2019, in Budapest, Hungary! Keep an eye on our website for more information coming soon.
 
 
 
 
 

New Audit

In view of the continuous quality assurance, the European Commission will periodically re-assess accepted centres by an independent assessment body. If you are an Endo-ERN member, please prepare yourself by having available the documents as mentioned in document 8 ‘self-assessment checklist tool ‘ of the original application. More information on which reference centers will be audited will follow soon.

 

 
 
 
 
 

Video: Getting started with CPMS

The European Commission has released a video on how to get started with the Clinical Patient Management System (CPMS). The video details the process of how to request access to CPMS and equally how to use the two factor authentication system which is used to log into the system. It is now possible to discuss complex cases via this virtual consultation IT system. So please register and login frequently to get the system running!

 

 
 
 
 
 

Visit us at ECE2018!

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Don't forget to visit our stand and symposium at ECE2018 in Barcelona! Endo-ERN and EuRRECa will be at the stand from Sunday to Tueseday, so drop by to view our posters, have the opportunity to meet-and-greet Endo-ERN and EuRRECa experts, or just to have a chat! You might even pick up some nice Endo-ERN goodies while you're there.

 

Can't attend ECE yourself to ask your questions? Send us a question via our twitter @rareendoern!

 

 
 
 
 
 

New ePAG Patient Representatives

Two new European Patient Advocacy Group Representatives have joined the Endo-ERN ePAG! Arlene Smyth will join MTG7: Disorders of Sex Development & Maturation and Marina Valenti will join MTG3: Genetic Disorders of Glucose & Insulin Homeostasis.

 

 
 
 
 
 

Rare Disease Registries Kick-off

  Rare Disease Registries Kick-off

EuRRECa was present at the Rare Disease Registries Projects kick-off meeting in Luxembourg on 17th April. The meeting was hosted by CHAFEA at the DG SANTE headquarters and was attended by representatives from all 5 of the registries projects awarded funding from the European Union’s Health Programme to develop core registries for rare conditions within the European Reference Networks.

 

 
 
 
 
 

Upcoming events