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.
Main Thematic Groups
According to usual classification of endocrine conditions, specific diagnostic and therapeutic approaches and composition of the required multidisciplenary teams, eight established Main Thematic Groups (MTGs) were defined within Endo-ERN.
The first patient meeting for Eastern European countries on thyroid diseases
On May 10th and 11th, The Bulgarian organisation VIOM (a patient organisation for thyroid diseases) organised the first patient meeting for Central/South-Eastern European countries on thyroid diseases, at the same time as the First Scientific Conference for Central and Eastern Europe on the Thyroid Diseases.
First EndoRARE Webinar: HYPOPARATHYROIDISM in adults
On the 28th of February Lars Rejnmark presented the first EndoRARE Webinar: HYPOPARATHYROIDISM in adults, diagnosis and therapeutic challenges.
MTG6: Pituitary meeting
On the 18th of February, 2019, a small Pituitary group meeting was held in Leiden, The Netherlands.
Main Thematic Group 8: Thyroid meeting
Members of the Main Thematic Group (MTG) 8: Thyroid met in Paris, at Necker Enfants Malades University Hospital, on the 23rd of January 2019 to discuss the ongoing work and progress of the MTG and it’s subgroups. Chair of MTG8, Michel Polak, wrote a short report about the meeting.
Nienke Biermasz appointed as professor of Endocrinology
Per February 1st 2018, our adult chair of the Main Thematic Group of Pituitary, Nienke Biermasz, was appointed as professor of Medicine at the LUMC/Leyden University. This Friday the 18th of January, 2019 the official ceremony will take place where she will officially accept her new position, by giving her inaugural lecture in Leiden (Academy building Leiden University).
Quality of Care Standard for Adrenal Disorders
Over the past three years a quality of care standard for adrenal disorders has been developed and was recently listed in the Register of the Dutch National Health Care Institute in September 2018. The standard was initiated by the consortium AdrenalNet and was developed in cooperation with both patients and healthcare professionals.
Dissertation on Cardiovascular Risk and Steroid Metabolism in Congenital Adrenal Hyperplasia
In October 2018, Christiaan F. Mooij pubished a dissertation on Cardiovascular Risk and Steroid Metabolism in Congenital Adrenal Hyperplasia (CAH).
IFCAH Call October 2018
The international fund Congenital Adrenal Hyperplasia (IFCAH) is opening a call for proposals in October 2018!
Care for Pituitary Adenoma course
The 2nd workshop for multidisciplinary teams caring for pituitary tumours, CAPITAL, was held on June 7 and 8, in Leiden, The Netherlands and was a big succes.
