Endo-ERN Newsletter January-February 2022 ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏
 
January - February 2022
 
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Endo-ERN coordinating office

The Endo-ERN Coordinating office transferred from Leiden University Medical Center (LUMC) to Amsterdam UMC, as Endo-ERN coordinator Prof. Alberto Pereira has accepted a new position in Amsterdam UMC per 1 March 2022. Amsterdam UMC is already full member of Endo-ERN as well as coordinating center of ERN Guard-Heart (coordinator Prof. A.A. Wilde).

 
 
 
 
 

ERN Grant

On March 1st, the Endo-ERN coordinating team submitted an EU (bridging) grant application for the next period of 18 months in order to ensure the business continuity of the functioning and enhancement of the network as well as the further development and quality improvement of the current and future activities, including EuRRECa, the European Registries for Rare Endocrine Conditions. As such, the network will continue to enable patients with rare endocrine conditions and their health care professionals / providers to benefit from pooling of expertise, knowledge and resources at EU level and to receive the appropriate diagnosis and treatment, as well as enhance knowledge generation, training, and research in the area of rare endocrine conditions. Ultimately, Endo-ERN will result in the best possible care for every patient with a rare endocrine condition.

From March 1st 2022 onwards, the activities of Endo-ERN are structured into 8 main thematic groups, which are horizontally connected to all 7 work packages.

 
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Endo-ERN webinar

On Tuesday June 7th at 17:00 – 18:00 CET an Endo-ERN webinar about “Noonan syndrome with emphasis on current guidelines regarding growth, endocrinology and growth hormone therapy” will be given by Jovanna Dahlgren from Gothenburg University, Sweden and Cees Noordam from Radboud University Medical Centre, the Netherlands and Centre for Paediatric Endocrinology Zurich (PEZZ), Zurich, Switzerland.

 
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Endocrine Connections

Special series in Endocrine Connections

Endocrine Connections is excited to announce that it will shortly be publishing a new special series in collaboration with Endo-ERN. The series forms are a part of Endo-ERN's 5th year celebrations which are running throughout 2022. All articles included in the series will be published open access, making them freely available to access online.

The special series will be edited by Senior Editor George Mastorakos (National and Kapodistrian University of Athens), and Guest Editors Violeta Iotova (Medical University of Varna) and Jérôme Bertherat (Hôpital Cochin).

 
 
 
 
ECE
 

ECE 2022

Endo-ERN will be physically present at ECE2022 in Milan with a joint ESE & Endo-ERN symposium. Furthermore Endo-ERN will have its own stand, next to the stand of our EuRRECa registry.

Sunday 22 May 12:30 – 14:00 
Endo-ERN Steering Committee meeting

Monday 23 May 11:50 -13:20
ESE & Endo-ERN Joint session: Retrospect and prospect 

11:55 - 12:15 Roadmap of Endo-ERN – reflection of the first 5 years
Prof. Alberto Pereira & Prof. Olaf Hiort

12:15 - 12:35 Highlights of the ESE Rare disease committee
Prof. Simona Glasberg

12:35 - 12:55 Joint guideline activities of ESE and Endo-ERN – Scientific perspective and patient expectations
Prof. Anna Nordenström

12:55 - 13:15 Rare diabetes – benefit of Endo-ERN
Prof. Martin Wabitsch 

 

 
 
 
 
 

Patient Information Materials - 46,XY-DSD

The website has been updated with new patient information materials about the rare disease "46, XY-DSD".

You will find here:

 
 
 
 
 

Upcoming CPMS Training 8 April 2022

For all of our new and existing members, we are holding a CPMS training workshop on Friday 8th of April from 10:00-12:00 CET.

This online workshop will cover the following topics:

  • How to register your members: step by step
  • Walkthrough of the system:
    • Dashboard
    • Basic navigation
    • Personal settings
  • Where to find guidance/ resources for specific tasks
  • Questions & any specific queries

 

 
 
 
 
 
Isabel Wagner

New Operational Helpdesk Manager

We warmly welcome Dr Isabel Wagner who joins the Operational Helpdesk (OH) from the Endo-ERN pediatric office in Lübeck, Germany, alongside Emily White, from the Amsterdam team.

Isabel is a specialist in pediatric endocrinology and diabetology. Having conducted research in several locations across European, including Leipzig, Stockholm and Cologne, we are delighted to add her clinical expertise and experience to our existing helpdesk. With her assistance, we hope to further develop the CPMS alongside our network members, update the current CPMS, and assist with any matters that arise for our Endo-ERN experts. 

 
 
 
 
ERN logo_Exchange Programme 2021-2022
 

Exchanges between ERN's

We are pleased to announce that the ERN Clinical Exchange Programme is expected to be restarted soon. Please be aware of the great opportunity that exchanges are also possible between member HCPs of different ERNs. In case of interest to serve as a host institute or to travel to a host center, please apply via this link below.

 
 
 
 
  ERICA expanding Knowledge

One year ago, on March, 1st 2021 the European Rare Disease Research Coordination and Support Action (ERICA) started officially! The aim of the ERICA consortium, in which all 24 European Reference Networks (ERNs) take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity. First deliverables are already available, like Informed Consent Form and Data Sharing Agreement that can be used overall. To help the ERN community in understanding the process of translation and to support their collective ability to develop knowledge into patient benefit, a catalogue of current translational research services available to the rare diseases research community has been developed and available at ERICA website

 
 
 
 
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In this workshop, the feedback received from the ERN registries on the level of discovery that should be authorised for either anonymous or authenticated users of the Virtual Platform will be discussed first. The practical use of the VP will be presented in a Demo session. Subsequently, a hands-on session will allow participants to test the Virtual Platform and provide their feedback. Researchers as well as stakeholders from industry, the member states and the European Medicines Agency are invited to present their thoughts about the Virtual Platform and discuss the type of collaboration they envision with the ERNs

 
 
 
 
 

Endo-ERN General Assembly 2022

On Tuesday & Wednesday 15-16 February 2022, the 6th virtual Endo-ERN General Assembly was organised and was attended by almost 200 participants, including all of our 34 new members!

The meeting had a morning programme on both days and in the afternoon MTG specific session were organised. Prior to the GA, the Steering Committee & Advisory board meeting was held. We thank all attendees for their great attention and valuable inputs, specifically during the MTG specific sessions.

Presentations are available:
Presentation of day 1
Presentation of day 2
Presentations of all MTG sessions

 

 
 
 
 
 

Upcoming Events