Endo-ERN Newsletter April - GA highlights

Endo-ERN together again

Endo-ERN recently hosted an in-person annual General Assembly (GA) at Amsterdam UMC earlier this month.  Find out more about this engaging and informative meeting below.

Check out the new EuRRECa website with helpful information for researchers and patients alike.   And don't forget to bookmark!  We also highlight our educational resources that are available to our members including upcoming webinars.

Enjoy the read!

Endo-ERN Team

GA Group picture at 50 percent

Endo-ERN GA Highlights

Over 150 members of Endo-ERN gathered at the Amsterdam UMC earlier this month for the annual Endo-ERN General Assembly (GA). The was the first in-person meeting of our members since 2019.


NEW: Registries reports on the new website

A new website for EuRRECa & EuRR-Bone! 

Launched at the recent Joint Symposia in Leiden, the website provides useful tools and information for researchers and patients alike.  The recently published registry reports for 2022 for e-REC and Core Registry are available for download.  

Check out the links below!


The ERICA General Assembly will be held 6-7 July in Madrid.  If you are engaged in research this is the perfect opportunity to connect with other ERN researchers and discuss the progress and future of the ERN related research activities. You can register using the link below.  

The aim of European Rare Disease Research Coordination and Support Action (ERICA)  is to build on the strength of the individual ERNs and create a platform that integrates the research and innovation capacity of ERNs.  


RESOURCE: Educational webinars

There are several webinars open for registration. 

  • May 10:  Introduction on Patient-Reported Outcomes and considerations before including them in a clinical trial.  Study case from teh ERN-EuroBloodNet
  • June 1:  Getting to Know Virtual Consultations
  • June 20:  Puberty induction in the two sexes - a case-based discussion
  • June 27:  ESE Talks...Use of EuRRECa databases to enhance our understanding of XLH and parathyroid carcinoma 

Click the links below for more information.  

RESOURCE: Publications

Endo-ERN in partnership with Endocrine Connections have a curated special collection of open access rare endocrine publications.   Recent articles include:    

  • Outcome of COVID-19 infections in patients with adrenal insufficiency excess
  • Mapping of the current transition of care practice for patients with pituitary disease at Endo-ERN reference centers
  • Development of pediatric differentiated thyroid carcinoma registry within the EuRRECa project:  rationale and protocol

Check out the link for over 60 publications related to rare endocrine connections written by Endo-ERN experts.  You will also find the Rare Disease Day supplement for download and sharing.  


There are over 40 recordings of past webinars covering topics from our main thematic groups (MTGs).  The most recent additions include Getting to Know Rare Disease Registries & Genetic Diagnosis of Azoospermia from Chromosomes to Whole Exome Analysis. 

Subscribe now to ensure you are notified every time a video is added.