ACTION: for all e-REC reporters

We invite you to actively participate in the Core Registry to enhance the depth and breadth of our invaluable datasets.  Your crucial role as e-REC reporters ensures the success of our collaborative efforts in advancing rare endocrine and bone/mineral conditions research.  By contributing to the Core Registry, you not only empower clinicians and researchers but also play a vital part in shaping the future of patient care.  Your dedication is pivotal in creating a comprehensive resource and improve the lives of individuals affected by these rare disorders. 

Join us in this collective endeavor to make a lasting impact - your input matters!  

UPDATE: ERN Funding

As of October 2023, new EU grants have been developed for all European Reference Networks (ERNs) and EuRREB  is confirmed to be part of both Endo-ERN and ERN BOND until at least the end of 2027. 

EuRREB will receive funding to continue the development of both e-REC and the Core Registry and make sure more data is available for research on rare endocrine and bone conditions. 

In the coming years we will take more steps in expanding the research scope and thereby improving clinical and patient-related outcomes.  We are very happy to be part of these ERNs and get the support needed to continue our work!  

REGISTER: Upcoming webinars

Endo-ERN continues to deliver informative webinars that increases the expertise in the network.  Register now for these upcoming webinars:  

The mysterious links among cilla, centrosomes and insulin resistance:  What have we learned from human genetics?  

Adrecocortical carcinoma - diagnosis and personalized management 2024 

There are over 60 recorded webinars available on the Endo-ERN YouTube channel.  Check it out and subscribe now.  

UPCOMING: Events including Endo-ERN endorsed

Check out the in-person educational opportunities organised by Endo-ERN members upcoming in 2024.   

• *4th CAre for PITuitary Adenoma Leiden (CAPITAL) Course 
• European Conference on Rare Diseases 2024
• International Meeting on Rare Disorders of the RAS-MAPK Pathway
• *I-DSD Symposium 2024
• World Orphan Drug Congress 2024

*Endo-ERN endorsed events

If you have an event upcoming that you would like to have endorsed click the button below to find out more.

NEW MODULE: Gender Incongruence

The access to trangender healthcare, especially for children and adolescents, varies significantly across Europe.  This condition specific module launched in October 2023 and is the work of the Gender Incongruence Study Group.  The module is aiming to analyse the trends in transgender healthcare and hopefully to deliver a better and more homogeneous care to transgender and gender diverse youth.  

INPUT REQUESTED: Transversal Working Group

Due to the increasing awareness of the relevance of genetic testing for the diagnostic workup of endocrine disorders, it has been decided to establish a transversal working group on genetic testing of endocrine disorders, to create a platform for the exchange and improvement of genetic tests and strategies, for the best benefit for the patients and their families.

Further details and steps will be presented at the General Assembly in Milano in April. The transversal working group and initiative has been suggested by Dirk Prawitt (University Hospital Mainz/Germany) and Thomas Eggermann (University Hospital Aachen/Germany), who are starting the first discussions and steps to implement the working group.

However, this idea needs input from all of you!

Therefore if you have any suggestions/comments on this topic, want to join the working group or want further details on the rationale and goals please email the project office. 

ePAGS in action: Petra Brügmann of the German Network of Pituitary and Adrenal Diseases

Endo-ERN ePAGs are involved in all aspects of the work of Endo-ERN. In addition they are very engaged in their own organizations and local community activities. Petra is very involved in the pituitary and adrenal communities and shared the following highlights: