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!
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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.
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.
The first call for new members to join existing 24 ERNs is open until 30 November 2019.
For more information click here
We proudly announce that our Endo-ERN website is now available in Spanish and Portuguese.
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.
Other languages will follow soon!
On June 7th 2019, in the old Venetian villa Contarini in Piazzola sul Brenta owing to the Venetian Region Counsil, the Endocrinology Unit of Azienda Ospedaliera-University of Padova (director Carla Scaroni, MD ) organized for Endo ERN group of Padova a meeting dedicated to medical doctors involved in child- and adult-hood endocrine rare diseases.
The aim of the meeting was to ameliorate the network among different care centers in our territory to uniform the standards of diagnosis and therapy for rare disease patients.
The knowledge of a raredisease is often spread throughout the world. That is why LUMC Leiden is a participant in Irdirc, a consortium with more than 40 member organizations from all over the world. In this video Prof. Aartsma-Rus explains how exactly they work together.
The next Endo-ERN Steering Committee & Advisory Board meeting is going to held on Friday September 20th, 2019 from 13:00 – 14:30 and from 16:30 – 17:30 hrs in Vienna, at the ESPE congress venue.
The first common newsletter about all ERNs has been published by DG Health and Food Safety.
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