NEW: Joint Action on Integration of ERNs into National Healthcare Systems (JARDIN)

Launched in March, JARDIN's objective is to embed ERNs in to national healthcare systems and improve access to rare disease care.  Check out the newly operational website and and the most recent newsletter.  

NEW GUIDELINE: Bardet-Biedl syndrome

Just published Bardet-Biedl syndrome improved diagnosis criteria and management: Inter European Reference Networks consensus statement and recommendations .

Four European Reference Networks (ERN-EYE, ERKNet, Endo-ERN, ERN-ITHACA) have teamed up to establish a consensus statement and recommendations for Bardet-Biedl syndrome (BBS) providing guidance for the relevant experts.

ERICA GA & ERN Research Conference

The 4th ERICA General Assembly & ERN Research Conference will take place from 11-13 December, 2024 in Udine, Italy.

The call for abstracts and registration is now open.  

Hosted by MetabERN.

REGISTER: Upcoming webinars

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

Fibrous Dysplasia with emphasis on hypophosphataemia 

Turner syndrome and fertility options 

Long-term outcomes in CAIS 

SWEET-the role of worldwide registry to investigate rare diabetes 

The new genetics of Turner syndrome webinar 

Management of genetic obesity and food seeking behaviour e.d. in BBS/Alstr?m/Prader Willi syndromes/ use of GLP-1 agonists in these conditions   

In addition our partners the European Society of Endocrinology (ESE) and the European Society of Paediatric Endocronology (ESPE) are delivering rare disease webinars as well.  Register/save the date for these upcoming webinars:

ESE Talks...Genetic diabetes, focus on Wolfram syndrome

ESE Talks...Genetic endocrine tumours with a focus on pancreatic neuroendocrine tumours (NETs) 

ESPE Connect...Rare Thyroid Conditions 

Points to note:  all Endo-ERN webinar registrants receive a link to the recording.  Register now even if you cannot make the live webinar.  

There are over 60 recorded webinars available on the Endo-ERN YouTube channel.  

Check out our YouTube and subscribe now.  

UPCOMING: Events

Check out the in-person educational opportunities upcoming in 2024.   

September:  ESE Young Endocrinologists & Scientists (EYES) Meeting, Helsinki, Finland

October:  Adrenal failure - update on causes, diagnosis, treatment, crisis, and life expectancy

World Orphan Drug Congress 2024, Barcelona, Spain

Check out the interactive programme with over 200 talks planned.  Don't forget as an Endo-ERN member you are eligible for a free VIP pass.  

November:  European Society Paediatric Endocrinology (ESPE), Liverpool, England

December:  ERICA GA & ERN Research Conference 

If you have an event upcoming that you would like to have endorsed, click the button below to find out how to apply for endorsement.  

CONTRIBUTE: Cross-Border Access to Paediatric Clinical Trials Working Group (WG) survey

The Cross-Border Access to Paediatric Clinical Trials Working Group (WG) created by the European Network of Paediatric Research at the European Medicines Agency (Enpr-EMA) is collecting data. The aim of this WG is to facilitate the inclusion of children and young people in clinical trials across Europe avoiding any language barriers. 

RESOURCE: Handbook of ENDOCRINOLOGY and METABOLISM

As future endocrinologists join your team this Autumn remember the first European endocrinology textbook developed by members of the Endo-ERN.  

Discover this extensive illustrated textbook of endocrinology created primarily for students and residents available with a 20% discount.  

RESULTS: Screening Rare Disease at Birth

EURORDIS recently published the results of their full Rare Barometer survey which can be found here. The key findings are available in multiple languages.