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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.

SURVEY

NEWSLETTER

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

GUIDELINE

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.

WEBINARS