Endo-ERN Newsletter November 2020 ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏
 
November 2020
 
 
 
 
endo-webinars_201218_speakersphotos
 

Endo-ERN webinar: Sex Development & Maturation

On Friday December 18th at 13:00 – 15:00 CET an Endo-ERN webinar is organised with multiple speakers within the main thematic group of “Sex Development & Maturation”.

Program:

13:00 Introduction by the chairs Olaf Hiort, Luca Persani, Manuela Brosamle & Arlene Smyth

13:10-13:20 Olaf Hiort, Lubeck, Germany

German DSD network and quality of care

13:20-13:40 Sasha Howard, Queen Mary University of London, UK

Genetics of delayed puberty: differential architecture of CDGP vs CHH

13:40-13:55 Martine Cools, University of Gent, Belgium

Management of GD in Europe: an update in pediatric care

13:55-14:10 Guy T’Sjoen, University of Gent, Belgium

Management of GD in Europe: an update in adult care

14:10-14:20 Message from ePAGs

14:20-14:40 Anders Juul, University of Copenhagen, Denmark

INSL3 an useful marker in DSD and hypogonadism?

14:40-15:00 Anna Nordenström, Karolinska, Stockholm, Sweden

Update on the Endo-ERN guideline on sex hormone replacement

 
 
 
 
 

Recording Endo-ERN webinars

The recording of MTG3 webinar by Fumihiko Urano on "Wolfram syndrome – Diagnostics, Biomarkers, and Therapeutic Options" & and the recording of MTG5 webinar by the Irene Netchine on "Diagnosis and management of Silver–Russell Syndrome, a multidisciplinary care is necessary" are now available for viewing at your own convenience.

 
 
 
 
 
MTG8 chairs

New MTG8 Chairs

We have the pleasure to inform you that profs. Juliane Léger & Edward Visser have been elected as the new Paediatric & Adult chair of the Endo-ERN Main Thematic Group 8 “ Thyroid”.

We congratulate both Juliane and Edward with their new position within the Steering Committee and look very much forward to their further guidance in the continuation of the ongoing successful activities and the development of new activities is close collaboration with the ePAG co-chair and all members that will enable us to accomplish the mission of our network.
 
 
 
 
 

Endo-ERN General Assembly & EuRRECa annual meeting 2021

Given the ongoing covid-19 pandemic and related situation in Europe, we regret to inform you that we have decided to cancel the Endo-ERN General Assembly & EuRRECa meeting scheduled from 12-14 April 2021 in Verbania, Italy. Instead of the face-to-face meeting, we will offer again a shortened virtual Endo-ERN GA & EuRRECa meeting for those dates.

More information about the events will be announced soon!
 
 
 
 
 
Alessandro Lazzerini

New ePAG MTG1 Adrenal

Welcome to our new Endo-ERN ePAG representative Alessandro Lazzerini, who has recently joined Main Thematic Group 1: Adrenal, representing The Spanish Association of Congenital Adrenal Hyperplasia (CAH).
 
 
 
 
 

Launch of Exchange Programme for healthcare professionals in European Reference Networks

Exhange Programme 2020-2022 

 

 

Knowledge sharing and stimulating collaboration between health care professionals in European Reference Networks (ERN). That is the aim of the Exchange Programme 2020-2022, funded by the European Commission. In the coming two years, three different rounds of exchanges will take place between professionals of HealthCare Providers that are member of an ERN. The first round of visits will start in March 2021.

The objective of the ERN Exchange Programme is to palliate disparities in specific knowledge or gaps in expertise by facilitating the arrival of high-level expertise in a considerable number of diseases to a big number of Healthcare Providers.

Ecorys Ltd will provide services to all European Reference Networks in the framework of the Exchange Programme of the European Commission.

More information on the Exchange Programme will follow soon.

 
 
 
 
 

The ERICA Project: joining forces to integrate research and innovation capacity across all 24 European Reference Networks

  Alberto Pereira Arias

The European Rare dIsease research Coordination and support Action (ERICA) Project application under H2020 has received a positive evaluation for funding (2.3 million euros for 29 partners) to establish a structural framework in support of the research activities of the ERNs.

ERICA will strengthen research and innovation capacity by integration of ERN research activities, and outreach to European research infrastructures to synergistically increase impact and Innovation. This will result in safe, accessible and efficient access of therapies for the benefit of patients with rare diseases.

 
 
 
 
 
SCAB meeting 16/11/2020

Endo-ERN Steering Committee & Advisory Board meeting

On Monday November 16th 2020 a virtual Endo-ERN Steering Committee & Advisory Board meeting was held to discuss the past and ongoing activities of Endo-ERN, and to plan the activities of the upcoming months. The meeting was attended by 42 persons representing all 8 main thematic groups and 5 work packages.
 
 
 
 
 
ecrd2014-mini

ECRD 2020 Executive Summary

The interactive Executive Summary is a document compiled of the key takeaways from the conference, highlights from each theme, key facts and figures on the event itself, full list of committee members, as well as a snapshot of all keynote speakers and the three poster winners. We hope that it provides you with a clear and concise overview of the event.
 
 
 
 
 

Endo-ERN Covid-19-webpage

  endo-covid-19

Endo-ERN has created a page dedicated to Covid-19, especially for patients with rare endocrine conditions who need information, and clinicians treating COVID-19 patients with rare endocrine conditions.

This page is continuously updated with the most relevant information from EU countries and European initiatives. Already 12 countries provided relevant information. Interested? Click here! 

 
 
 
 
 

Upcoming events