REGISTER: Upcoming webinars

Our Main Thematic Groups (MTGs) continue to make plans for interesting disease specific educational webinars.  Check out the member led webinars planned below.

• Pregnancy managment in CAH

Next week ESE Talks...Congenital hypothyroidism and related problems featuring members of Endo-ERN.   

In addition there are webinars organised by the European Medicines Agency that might be of interest to you or someone on your team,

Transitioning trials to the CTR (CTIS) for non-commercial sponsors

Orphan Medicines Development - ask the European 

JOB FAIRY: Phd positions at University of Lubeck

Exciting opportunities are available at one of Endo-ERN’s reference centres!

Several PhD postions are available at the University of Lubeck’s Collaborative Research Center (CRC) 1665. Sexdiversity – Determinants, Meaning and Effects of Gender Diversity in Socialcultural, Medical and Biological Contexts is dedicated to researching the diversity of biological sex over the next four years.

Check out more information about CRC 1665 and the available positions.  

ONGOING: Continuous Monitoring (CM) exercise

The annual Continuous Monitoring (CM) exercise for Endo-ERN HCPs (Full Member and Affiliated Partners) for 2023 data will run from 1 January until 29 February 2024.   

During this time, all Endo-ERN HCPs must complete the following steps:   

1. Download your centre's new Patient Numbers for rare endocrine diseases in 2023 via e-REC   
2. If not up-to-date, obtain these numbers from your local system and update e-REC   
3. Report in the DG Sante/European Commission portal directly on 2 specific indicators   
4. Complete a survey on the remaining indicators that has been sent to the HCP representatives for Endo-ERN  

This process is slightly different from last year, therefore see our website for all information, support resources and a guidance video describing the exercise/ changes on our YouTube channel.  

In addition our next Q&A session is on Friday, 9 February 1300-1400  with our evaluation manager .  To receive a link and/or ask a question please send an email

CALL FOR POSTERS: European Conference on Rare Diseases & Orphan Products (ECRD)

The ECRD is the largest, patient-led rare disease policy-shaping event held in Europe. This event will take place 15-16 May, 2024 at The Square in Brussels.

Poster themes include:

• Research & Innovation
• Access to Highly Specialized Care
• Mental Health & Wellbeing
• Rare Disease National Plans
• Diagnosis & Screening
• Access, Availability, and Affordability of Treatments
• Open Topic

For more information check out the ECRD website.   

UPCOMING: Events including Endo-ERN endorsed

There are a number of in-person educational opportunities organised by Endo-ERN members upcoming in 2024.  Many of these actitivies are endorsed by Endo-ERN.  

• Pediatric Diabetologic Team Needs:  New Diagnostic and Therapeutic Perspectives
• 4th CAre for PITuitary Adenoma Leiden (CAPITAL) Course 
• I-DSD Symposium 2024

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

INFO: Next steps for ERNs conclusions from Rare Disease Conference October 2023

The European Economic and Social Committee (EESC) organised a memorable conference on Rare Diseases and European Reference Networks (ERNs) under the auspices of the Spanish Presidency of the Council of the EU and in cooperation with the authorities of the Basque Country, on 11 October 2023 in Bilbao. Endo-ERN staff from the project office were in attendance.

The conclusions of the conference are now available on the on the event's webpage, where you will also find reports, photos, presentations, recordings and press articles.