For the first time the European Society for Paediatric Endocrinology (ESPE) and the European Society of Endocrinology (ESE) have joined forces to host a Joint Congress with the theme Connecting Endocrinology Across the Life Course.  This event will take place 10-13 May in Copenhagen Denmark.  

If you are attending the Joint Congress there are many Endo-ERN activities to participate in including a visit to our booth or attending the symposium.  If you are presenting at the Joint Congress please complete our member survey.  More information about these activites available below.  

Enjoy the read!

Endo-ERN Team

TUESDAY: Endo-ERN Symposium

An informative symposium will take place on Tuesday, 13 May, 10:30-1200 in Hall A.  The session will be chaired by Alberto Pereira & Olaf Hiort, Endo-ERN co-coordinators.   ​​

10:30-10:50  Endo-ERN: a key player in the triad with the European Endocrine Societies, Alberto Pereira, the Netherlands & Olaf Hiort​, Germany
​

10:50-11:10 Transversal Working Group on Transition of Care​, Andrea Isidori, Italy & Ulla Doehnert, Germany
​

11:10-11:35 Genital Surgery in Disorders of Sex Development​, Hedi Claahsen, the Netherlands
​

11:35-12:00 Challenges associated with late diagnosis of intersex variations and its links to gender identity, Lexi Breen, United Kingdom

BOOTH: 44&45

Endo-ERN will host a booth 44&45 with Endo-ERN ePAGs and our colleagues from EuRREB.  Stop by to find out more about Endo-ERN's activities or receive support for CPMS 2.0 or the EuRREB registries.  

Thank you to our partners ESPE and ESE for their kind sponsorship of the Endo-ERN booth and registration.  

AT THE BOOTH: Posters from EuRREB, ePAGs and WP3

Want to know more about activities within Endo-ERN work packages?  Come by the Endo-ERN booth 44&45 and check out posters prepared specifically for the Joint Congress:  

• Creating Patient Journeys within Endo-ERN
• European patient advocacy group (Endo-ERN)
• The European Registries for Rare Endocrine and Bone Conditions (EuRREB): Collecting Core Data Elements and Clinician and Patient-Reported Outcomes
• The European Registries for Rare Endocrine and Bone Conditions (EuRREB): Results from the Platform for e-Reporting of Rare Conditions (e-REC)

ATTEND: The Patient's Voice sessions

The Patient’s Voice sessions will take place in the Congress Theatre on Sunday and Monday, bringing together patient advocates and clinicians to demonstrate how collaboration can improve disease awareness and managment. Sessions that might be of interest:

REPORT: Activity at the Joint Congress

We know that many representatives from Endo-ERN member institutions will attend the Joint Congress and share their #raredisease expertise.  This type of activity is a reportable indicator for the Continuous Monitoring (CM) process.  By  providing this information now you are taking the first step in 2025 reporting.   

COMPLETE: Survey on Endorsement

The endorsement of consensus statements, clinical practice guidelines and scientific meetings by Endo-ERN is something that is considered helpful to Endo-ERN members. WP7 would like to set up a clear strategy for this, and are interested to hear your views and opinions on this topic. Please fill in the (very short) survey on this matter!

REGISTER: Upcoming webinars

Endo-ERN experts continue to deliver informative webinars that increases the expertise in the network.  

June: Congenital combined pituitary hormone deficiency (CCPHD) in Europe

June:  Novel monitoring tools to detect chronic over- or under treatment in children in CAH 

June:  Rare disease research and the value of registries 

September:  Genotype-phenotype correlations in CAH

Register now for these upcoming webinars.  Remember if you cannot attend live, register anyway and you will receive a recording.

REGISTER: Upcoming Conferences and Training Events

Upcoming events that might be of interest to you or your team:

June:  CAre for PITuitary Adenoma Leiden (CAPITAL) Course 

June:  Advanced Postgraduate Course on Growth and Growth Disorders 

July:  16th European Paediatric Neurology Society Congress 

September:  European Socieity for Paediatric Endocrinology (ESPE) and French rare diseases healthcare network (OSCAR)

September:  ESE Young Endocrinologists and Scientists (EYES)

October:  World Orphan Drug Congress 2025 

UPDATE: Newsletter Preferences

To update your newsletter preferences go to the top of this newsletter and click on Update Profile.  You can then adjust your preferred topics to ensure that you receive a newsletter that contains information that you are interested in.  This short video shows you how to make the update.