Second exchange visit completed in the ERN Exchange Programme

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The second successful Endo-ERN exchange has been completed.

The Endo-ERN Exchange Programme participant Anna Strandqvist, a clinical psychologist working at Karolinska University Hospital in Stockholm participated in an exchange visit to share experiences on clinical practice, psychosocial care and standard procedures for psychological assessment of patients with rare conditions within Disorders of Sex development (DSD). The host for the exchange was the clinical psychologist Arianne Dessens, Erasmus Medical Center, Rotterdam and visiting professor at Ghent University. An aim for this cooperation is to establish, increase and strengthen networks for psychologists working with these patients.

This exchange opportunity was very much [...]

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IRDiRC Call for Experts – MedTech

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Working Group Opening: MedTech for Rare Diseases

The Therapies Scientific Committee (TSC), the Interdisciplinary Scientific Committee (ISC) and the University of Twente, the Netherlands, are jointly establishing a Working Group to explore the role and value of medical devices in rare diseases. The Working Group will primarily focus on devices used for either the treatment of rare diseases, such as implants, and devices used to support physical activities of patients, such as exoskeletons.

The development of “orphan” devices faces scientific and technological challenges, next to the need for an improved clarity regarding the requirements for specific technical [...]

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Webinar ETA guideline pediatric thyroid nodules and thyroid carcinoma

This webinar took place on December 15th, 2021

On Wednesday December 15th at 19:00 – 20:30 CET a webinar is organised about “ETA guideline pediatric thyroid nodules and thyroid carcinoma”.

Pediatric differentiated thyroid carcinoma (DTC) is a rare disease; however it’s worldwide incidence is rising. There are important differences between adult and pediatric DTC which is why a separate Pediatric Recommendation is necessary.

When compared to adult DTC, pediatric DTC often initially presents with more advanced disease. Despite the more aggressive presentation, pediatric DTC has an excellent prognosis. The most common genetic alterations in DTC are RET-PTC and NTRK fusions while mutations in BRAF, and RAS point mutations [...]

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VIth ISPAD/VAPES Diabetes and Rare Disease Course

This event took place from November 18th to November 19th, 2021

On Thursday 18th and Friday 19th of November the VIth ISPAD/VAPES Diabetes and Rare Disease Course is organised.

After the success of the previous five ISPAD/VAPES meetings (2011 to 2019), local organizers (Varna Pediatric Endocrine Society, VAPES) aim to attract any interested pediatric endocrinologists, pediatricians, postgraduate trainees, medical students and nurses in 2021. Understanding the high demand towards the medical community as well as the additional barriers for our field of medicine from the current pandemic, we also decided to make the event as widely accessible as possible, and will require only a registration without any registration fee. We will [...]

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Endo-ERN webinar: 80 years of radioiodine – what’s new?

This webinar took place on December 1st, 2021

On Wednesday December 1st at 15:00 – 16:00 CET an Endo-ERN webinar about 80 years of radioiodine – what’s new? will be given by Erik Verburg from Erasmus MC: University Medical Center Rotterdam, the Netherlands.

Radioiodine therapy was first tried in humans in 1941 – that is 80 years ago this year. In spite of this long success story, many aspects remain unclear or disputed. In this talk, I will give a brief overview of the history of I-131 therapy and the newer developments and insights in the field over the past few years, spanning both benign and malignant [...]

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First Endo-ERN Clinical Exchange program participant has arrived!

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The first Endo-ERN participant of this exchange program is Savi Shishkov, an endocrinologist in training at the the “St. Marina” University Hospital, and a assistant in the Department of Internal Medicine of the Medical University in Varna, Bulgaria. He was motivated to apply for this fellowship because of his interest in rare endocrine disease, and expanding the international cooperation between ERN HCPs. He has started his exchange to the Leiden University Medical Center under the supervision of Endo-ERN coordinator prof.dr. A.M. Pereira Arias, and pituitary MTG leader prof.dr. N.R. Biermasz on October 5th. During the four-week program, an insight into [...]

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Bone Curriculum Symposium and the Pre-Symposium on Rare Bone Diseases

This symposium took place from October 21st to October 22nd, 2021

The Bone Curriculum Symposium is a continuous structured educational lecture cycle on bone. It includes bone biology, physiology, pathophysiology, calcium and phosphate metabolism and covers bone, calcium and phosphate disorders, osteoporosis, diagnosis, management and treatment.

Furthermore, interactions of the skeleton with other organ systems are addressed. A full Bone Curriculum lecture cycle is covered by three consecutive yearly symposia. Participants of three symposia are accredited the Bone Curriculum Course Certificate. The intention of the Bone Curriculum is to provide high quality continuous education for clinicians interested in, seeing or treating patients with osteoporosis or bone diseases and is a structured [...]

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