EuRRECa Annual Project Group Meeting 2022

EuRRECa is holding its 4th annual meeting online on Monday 14th February 2022. This meeting will showcase the activities of the EuRRECa project which was launched in 2018 and the online platform allows us to welcome all professionals, scientists and patients and patient groups who have an interest in rare endocrine and bone conditions.

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ERN Workshop on Endocrine cancer: A challenge in adults and children – 4 May 2022

In the context of EJP RD’s ERN Workshops, a face-to-face workshop on “Endocrine cancer: A challenge in adults and children” aimed at giving an update on the molecular background and clinical management of rare endocrine malignancies is being organised by Prof. Barbara Jarzab of the M. Sklodowska-Curie National Research Institute.

The in-person event will take place on May 4th, 2022 at the M. Sklodowska-Curie National Research Institute in Gliwice, Poland.
The workshop is open by prior registration and selection to endocrinologists, oncologists, surgeons, radiotherapists, internists and pediatricians, pathologists, radiologists, nuclear medicine specialists who are employees of affiliated to an [...]

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Inauguration Professor Faisal Ahmed


On 1 March 2019, Faisal Ahmed was appointed as professor of medicine/endocrinology at the Leiden University.

Professor Ahmed’s Inaugural Lecture will (at last) take place Monday, April 3, 2023 in Leiden. You can now REGISTER to attend in-person.

If you would like to watch the live stream bookmark this page and tune in on the day.


Please note the event time is 1600-1700 (CET).

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ECE 2022

Endo-ERN will be physically present at ECE2022 with a joint ESE & Endo-ERN symposium. Furthermore Endo-ERN will have its own stand, next to the stand of our EuRRECa registry.

Monday 23 May 11:50 -13:20
ESE & Endo-ERN Joint session: Retrospect and prospect

11:55 – 12:15 Roadmap of Endo-ERN – reflection of the first 5 years
Prof. Alberto Pereira & Prof. Olaf Hiort

12:15 – 12:35 Highlights of the ESE Rare disease committee
Prof. Simona Glasberg

12:35 – 12:55 Joint guideline activities of ESE and Endo-ERN – Scientific perspective and patient expectations
Prof. Anna Nordenstrom

12:55 [...]

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Second exchange visit completed in the ERN Exchange Programme

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

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 and functional [...]

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Webinar ETA guideline pediatric thyroid nodules and thyroid carcinoma

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

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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