New educational activities from all corners of the network.  A new clinical practice recommendation, ePAG activities, and of course meetings and webinars for clinicians and researchers. 

We will start our outreach to support #raredisease in Ukraine.  

Enjoy the read!

Endo-ERN team

SHARE: Capacity building/best practice sharing for Ukraine (WP8)

As you may be aware during the funding process for the current grant there was the addition of Ukrainian focused work packages.

The objectives for WP8 are: 

• capacity building
• best practice sharing 
• active engagement of physicians in Ukraine in the same manner as their European counterparts.  

We are aware through engagement with the MTG chairs and representatives that there are many informal links between Endo-ERN healthcare providers and Ukrainian endocrinologists and their MDTs.  

We would like to take the opportunity to start developing a network of Ukraininan contacts that would be interested in the network activities.  Endo-ERN has created a survey if you would please share with your relevant contacts and ask them to complete.  They can also sign up for the newsletter to be kept up-to-date.

NEW: Clinical Practice Recommedations for the Diagnosis and Treatment of X-linked hypophosphataemia

New evidence-based guidelines were recently published.  A wide variety of topics are covered including:  

• Diagnosis of XLH
• Initial evaluation of the presence and severity of complications of |X-linked hypophosphaeaemia
• Definitions of responses to therapy in patients with X-linked hypophosphataemia
• Recommendations for follow-up of patients with X-linked hypophosphataemia
• Treatment of children and adult with X-linked hypophosphataemia
• Recommendations for management of burosumab in children
• Recommendations for management of oral phosphate and active vitamin D in children
• Recommendations for the prevention and managment of hyperparathyroidism
• Recommendations for recombinant human growth hormone
• Recommendations for musculoskeletal treatment
• Recommendations for managment of pregnant or lactating patients
• Recommendations for orthopaedic management in children
• Recommendations for orthopaedic management in adults
• Recommendations for management of oral health
• Recommendations for the management of hearing problems
• Recommendations for the managment of neurosurgical complications

ACTIVE: ePAG Association GRANDIER

Endo-ERN ePAG, Nathalie Ferard represents Association GRANDIER and has kindly provided an update newsletter on the many activities and resources available from the organisation.

WINNER: 2025 Patient Partnership Good Practice Challenge

Congratulations to Johan de Graaf and Petra Bruegmann for their recent win of the Eurordis 2025 Patient Partnership Good Practice Challenge! 

SUCCESS: TALENT meeting report

The 7th edition of the TALENT (Transition Adolescence and young aduLts – Endocrine diseases managemenT) conference took place on February 11-12, 2025, at the “Roma Eventi” congress center in Rome, Piazza della Pilotta 5. The event, officially endorsed by Endo-ERN, welcomed approximately 200 participants, including leading international experts in rare endocrine diseases.

REGISTER: Upcoming webinars

Endo-ERN experts continue to deliver informative webinars that increases the expertise in the network.  Accreditation is being sought for these webinars when possible, check individual listings.    

March:  Long-term outcomes in CAIS

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

June:  Rare diease research and the value of registries 

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 and e-learning that might be of interest to you or your team:

Joint Congress of European Society of Endocrinology (ESE) and European Society for Paediatric Endocrinology (ESPE) 2025, Copenhagen Denmark

Endo-ERN Endorsed:  5th CAre for PITuitary Adenoma Leiden (CAPITAL) Course

Endo-ERN Endorsed:  24th Advanced Postgraduate Course on Growth and Growth Disorders 

Endo-ERN Endorsed:  Symposium Prader-Willi Syndrome

Endo-ERN Endorsed:  VIIIth ISPAD/VAPES Postgraduate Course and Conference - Diabetes and Rare Disease Course

ESE Young Endocrinologists and Scientists (EYES)

16th European Paediatric Neurology Society Congress 

Call for abstracts:  ESPE-OSCAR Science Symposium

Our colleagues at ERN-EYE have an e-learning course on Inherital Retinal Diseases which might be of interest.