Newsletter September 2019

Read the September edition of the Endo-ERN newsletter now! The Launch of the call for members to join existing 24 ERNs has opened, Endo-ERN was present at ESPE2019 and much more.
Click here for the newsletter.

Questo articolo è stata postato il Generale.

Endo-ERN website now availaible in Polish

We proudly announce that our Endo-ERN website is now available in Polish. This way, we hope to reach more patients, caretakers, medical specialists etc. closely involved in the field of rare endocrine conditions, all over Europe, all over the world.

Questo articolo è stata postato il Generale.

Disorders of phosphate imbalance: a dysregulation of the FGF23 endocrine system

The National Coordinators of EndoERN, BondERN and ERKnet strongly aimed for this multidisciplinary meeting which brings together national and international experts on hypophosphatemia XLH to discuss its management and for its greater dissemination.

July & August newsletter

The July & August-edition of the Endo-ERN newsletter is out now! The call for new members to join the ERN will launch soon, 11 new Affiliated Partners joined the European Reference Network, information about the upcoming events and much more!

Click here for the newsletter

Questo articolo è stata postato il Generale.

Wolfram syndrome scientific and family meeting in Cardano al Campo (Varese, Italy)

On behalf of the “Associazione Gentian” the “Wolfram Syndrome Italy Association” we cordially invite you to the national scientific and family meeting to be held in Cardano al Campo (Varese, Italy), 21 September 2019. The meeting brings together Italian scientists, families and patients and will be focused on Wolfram syndrome. You will have the unique opportunity to network with colleagues and experts in the field.

Please click here for the program.


Groningen Pituitary and Skull Base Symposium

From 4 until 6th March 2020, the first Groningen Pituitary and Skull Base Symposium (GPS) to be held in March 2020 in Groningen, the Netherlands.

The GPS symposium is an initiative of two multidisciplinary teams (MDT’s), which are part of the UMC Groningen Comprehensive Cancer Center.
The former Pituitary team and the Skull Base team have merged over the past year into the Groningen Pituitary and Skull Base Center.

For more information please click here

Medical treatment for MCT8 deficiency

Background Deficiency of the thyroid hormone transporter monocarboxylate transporter 8 (MCT8) causes severe intellectual and motor disability and high serum tri-iodothyronine (T3) concentrations (Allan–Herndon–Dudley syndrome). This chronic thyrotoxicosis leads to progressive deterioration in bodyweight, tachycardia, and muscle wasting, predisposing affected individuals to substantial morbidity and mortality. Treatment that safely alleviates peripheral thyrotoxicosis and reverses cerebral hypothyroidism is not yet available. We aimed to investigate the effects of treatment with the T3 analogue Triac (3,3′,5-tri-iodothyroacetic acid, or tiratricol), in patients with MCT8 deficiency.

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Questo articolo è stata postato il MTG8.