Professor Faisal Ahmed has been appointed Professor of Medicine, in specific in Endocrine Registries, at Leiden University.
More information about about the symposium and the lecture will follow here.
The Endo-ERN Newsletter is out now!
Read more about the upcoming webinars, the second Endo-ERN Clinical Exchange program participant and much more!
ECE 2022 will be held in Milan, Italy from 21 -24 May 2022
More information will follow soon.
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 appreciated and useful in many ways for both the visitor and the host.
There are still enough opportunities for others for an exchange of 5-20 working days.
Click here for more information and how to apply
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 needs for each device (development, clinical trial, regulatory aspects). As such, the Working Group aims to create a better understanding and enhanced awareness of device developer’s needs, the standardized outcomes to define user needs for devices, and to offer a groundwork for developing solutions to improve the (regulatory) landscape of MedTech use for rare disease patients.
IRDiRC is looking for members to populate this Working Group with the below expertise in one or more of the following areas:
Patient (representatives), who have previously been involved in medical technology development.
Health care professionals with experience in the use/development of medical devices, including running clinical trials
Medical device design experience (academic and industrial)
Experts in technical file preparation
Regulatory experience for medical devices, from different geographies
Funders with experience on funding medical technology
The usual time commitment includes quarterly 1-hour teleconferences, one face-to-face workshop (1-2 days), and regular email correspondence.
If you are interested in taking part in this activity: Please send a CV, biosketch and letter of motivation (one paragraph each) to the Scientific Secretariat (email@example.com).
Importantly, do not forget to add in the subject of your email the reference of the project (Ref: WG-IRDIRC-MedTech).
Only selected candidates will be contacted. Other applications will be kept for potential future use.
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 are less frequent and therefore, the utility of molecular testing on cytology of thyroid nodules and on thyroid tissue in children may be different from that in adults. Lastly, the consequences of possible adverse effects of DTC treatment may be different for children because of their longer life span.
There is currently no European recommendation for treatment of pediatric nodules and pediatric DTC. For this reason, in 2019, the executive committee of the European Thyroid Association (ETA) instituted an expert panel, in collaboration with ESPE, to represent the international community of experts from a variety of disciplines including pediatric and adult endocrinologists, a pathologist, endocrine surgeons, nuclear medicine physicians, a clinical geneticist, and an oncologist. Consensus was achieved to use the ATA pediatric guideline 2015 as framework for the new European Pediatric Guideline. Based on the ATA pediatric guideline, the expert panel identified areas of discordance and clinical questions were formulated. For each clinical question, relevant literature was identified and, using the GRADE system, the quality of evidence was graded. The expert panel members discussed all available evidence and formulated recommendations based upon the newest evidence and expert opinion. The final recommendations were formed by consensus of the expert panel members.
On December 15th the new European Guideline for Pediatric Thyroid Nodules and Pediatric Differentiated Thyroid Cancer will be presented.
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 use a platform that allows interaction with questions and answers after each session. We would also be happy if registered participants send in questions regarding the interesting to them topics before the event so that the speakers could address at least some of these during the talks
POSTPONED to Monday July 4th, 2022
Professor Faisal Ahmed has been appointed Professor of Medicine, in specific in Endocrine Registries, at Leiden University. His inaugural lecture will be preceded by a joint hybride EuRRECa and EuRR-Bone symposium at the Fletcher Hotel Leiden and online.
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 disease and ranging from indication to late effects”.
The Endo-ERN Newsletter is out now!
Read more about the upcoming webinars & recordings, the first Endo-ERN Clinical Exchange program participant, EJP RD ERN Research Training Workshops Funding Opportunity and much more!