Read the February-March edition of the Endo-ERN newsletter now! It features a report on our third annual General Assembly, the first EndoRARE webinar, past meetings, and upcoming meetings!
On Thursday September 29th at 17:00 – 18:00 CET an Endo-ERN webinar about “For a prolonged use of antithyroid drug in children with Graves’disease” will be given by Juliane Leger from Hôpital Universitaire Robert Debré, France and Edward Visser from Erasmus MC: University Medical Center Rotterdam, the Netherlands.
Graves’ disease is much rarer in children than in adults. It may occur at any age during childhood but its frequency increases with age, peaking in adolescence. There is no specific cure for the disease. Antithyroid drugs (ATD) are the first-line treatment but they are used for various lengths of time. Alternative [...]
On Monday July 4th at 16:00 – 17:00 CET an Endo-ERN webinar about “The challenging diagnosis of TSH-omas and RTHbeta: a case-based discussion” will be given by Luca Persani and Irene Campi from Istituto Auxologico Italiano – Istituto di Ricovero e Cura a Carattere Scientifico, Italy.
TSH secreting pituitary adenomas are rare tumors causing central hyperthyroidism. This a rare entity, encompasses TSH-secreting adenomas (TSHoma) and Resistance to Thyroid Hormone (RTHβ) due to THRB mutations. The differential diagnosis between these two conditions remains a clinical challenge in some cases and indeed diagnostic delay and inappropriate treatments still occur, leading to a [...]
I would like to introduce myself to you as a new member of the Endo-ERN ePAG MTG1, from the end of May 2022. I have been nominated by the Dutch Adrenal Society NVACP and from the 25th of May I will take over from Mr. Johan Beun, whom does intend to retire in the summer of 2022.
My connection with adrenal disorders is that I myself since 2016, have been suffering from steroid-induced adrenal insufficiency and diabetes due to prednisone use, in severe asthma.
In my search for information about this adrenal disorder and its treatment, I came into contact [...]
The 6th Endo-ERN General Assembly will be held on Tuesday & Wednesday 4 & 5th of April 2023 in Amsterdam.
More information will follow in due course.
Join us for the first joint rare disease webinar from ESE, Endo-ERN and ESPE discussing:
Essential insights for the transition from paediatric to adulthood care in rare pituitary disorders
Chairs: Violeta Iotova (Bulgaria), Nienke Biermasz (Netherlands) and Evangelia Charmandari (Greece)
The session will follow the programme below:Introduction from the Chairs Mapping of the current transition of care for patients with pituitary disease at Endo-ERN Reference Centers
Dr Savi Shiskov (Bulgaria) Presentation of a use case illustrating unmet needs from the patient perspective.
Patient/parent representative Discussion and proposal for next steps [...]
The workshop “Estonian Pituitary Update Course” will takes place in Tallinn (Estonia) from October 12 to October 14, 2022 and has speaker presentations from various Endo-ERN expert members from 3 different countries.
The workshop will cover the latest updates on acromegaly, Cushing’s disease, non-functioning pituitary adenomas, but also cancer effects on pituitary glands and much more! This update course is a joint course held by the European Society of Endocrinology (ESE) and Endo-ERN. The Estonian Endocrine Society will be the local host. All participants are encouraged to submit a case around pituitary diseases. It can be classical or something that [...]
The Second annual conference Idiopathic Ketotic Hypoglycemia will take place on June 11 and June 12, 2022. The annual conference will be fully virtual to make sure everyone has a chance to join, no matter where in the world they live. All of the presentations will be available after the conference for educational purposes.
The goal of the conference is to unite the families affected by idiopathic ketotic hypoglycemia, the experts, the healthcare professionals, and the industry so we together can take the first step towards an enhanced understanding of idiopathic ketotic hypoglycemia.
GloBE-Reg is a new international registry project that has been launched by the Office for Rare Conditions at the University of Glasgow. The project believes that post regulatory approval studies may be more effectively performed through registry-based studies that collect relevant real world data through a joint collaborative approach between scientific centres, industry partners and medical societies. GloBE-Reg will also use this approach to serve the needs of the endocrine community for assessing longer term clinical outcomes, which are particularly important to continuously expand our scientific knowledge and improve care in children.
On Tuesday May 10th at 16:00 – 17:00 CET an Endo-ERN webinar about “New growth treatments for Achondroplasia” will be given by Klaus Mohnike, Jean Pierre Salles and patient representative Patrica Carl.
Achondroplasia is the most common form of disproportionate dwarfism. The rare skeletal dysplasia leads to an adult height of ~130cm. Historically, Achondroplasia is not an ENDO-topic with experts coming from various fields. However, due to new treatment options, there is an overlap because prescriptions and surveillance will be primarily done by endocrinologists. Two medical experts and a patient representative will summarize the current situation and upcoming treatment options.