This 5-day course will cover the biology of human growth and clinical management of growth disorders. Teachers are internationally recognised experts in paediatric endocrinology and growth.
The course is directed towards clinical fellows and recently graduated pediatric endocrinologists and is limited to 26 participants. The course leaders will select a diverse group of fellows to ensure all participants are at a similar level of training. Proficiency in English is required, and while research experience is beneficial, it is not a prerequisite.
The course fee SEK 16 000 (approx. €1400, $1500, £1200) includes all teaching material, full board and lodging. The [...]
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The RE(ACT) Congress & IRDiRC Conference 2025 – A Rare Opportunity in Rare Disease Research.
The countdown is on for the 8th RE(ACT) Congress and the 6th IRDiRC Conference, a pivotal event in rare disease research and innovation.
From March 5-7, 2025, the city of Brussels will host this gathering of global experts, researchers, and advocates.
This event is organized by the BLACKSWAN Foundation, the International Rare Diseases Reasearch Consortium (IRDiRC), and the newly established European Rare Diseases Research Alliance (ERDERA), with the support of EURORDIS-Rare Diseases Europe, and Rare Diseases International (RDI).
Abstract Submission Deadline is 31 December, 2024.
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Driven by excellence and patient care, the UEMS 1st Congress will be where all stakeholders concerned by the best possible medical practice come together, connect and learn from each other.
It is also an exciting opportunity to build on the rich offerings of the UEMS and benefit from the collective expertise of Europe’s medical community.
More information or pre-registration by email or check out the website www.uems.eu
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Endo-ERN ePAGs Johan de Graaf, Dutch Pituitary Foundation and Petra Brügmann (EMENA) with Endo-ERN colleague Emily White (Endo-ERN) and Dirk de Rijdt of the European Society Endocrinology prepared a poster Multistakeholder Mapping of Endocrine Medicine availability and shortages in Europe: Endo-ERN expert centres.
This poster was Best Poster at the European Rare Disease Research Coordination and Support Action consortium (#ERICA) at the first ERICA ERN Research Conference.
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Congratulations to Endo-ERN researcher Edward Visser, Erasmus MC: University Medical Center Rotterdam who won the Best Presentation Award in the category ORAL: CLINICAL Trials at the ERICA GA. The topic Thyroid hormone analogue (TRIAC) therapy for resistance to thyroid hormone in children.
The aim of the European Rare Disease Research Coordination and Support Action consortium (#ERICA), in which all 24 European Reference Networks (ERNs) take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity.
ERICA hosted the first ERN Research Conference with a call to submit [...]
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Current drug shortages challenge the ability for adult endocrinology to diagnose adult GH deficiency. For proper diagnosis of GH deficiency in adults it is important to understand the clinical syndrome. The development of GH deficient features in time, after adult onset GHD, after transition and treatment at the pediatric age and in elderly patients. When to test, how to test? What to use? When to treat and when to stop?
The learning objectives of this webinar are:
How to diagnose and treat adult GH deficiency Development of new diagnostics, GH secretagogues Pitfalls in the diagnosis of adult GH deficiency Patient [...]
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Register now for this interesting webinar focused on case presentations related to adrenoleukodystrophy.
Moderators: Prof Christina Kanaka-Gantenbein and Prof Svetlana Lajic
Case presentation, Alexandra Tsigkri, Fellow in Endocrinology, Division of Endocrinology, Diabetes and Metabolism and Aghia Sophia Endo-ERN Center for Rare Pediatric Endocrine Disorders, First Department of Pediatrics, Medical School, National and Kapodistrian University of Athens, Aghia Sophia Children’s Hospital, Athens, Greece
Diagnostic work up and neurological management, Roser Pons, Professor of Pediatric Neurology, First Department of Pediatrics, medical School, National and Kapodistrian University of Athens, Aghia Sophia Children’s Hospital, Athens,
Endocrinological work up and management, Maria Dolianiti, Consultant in [...]
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ERN members participate in an annual Continuous Monitoring exercise, and in 2023 there was the first 5-year evaluation process. The EU has recently published a report that “...presents the final and overall results of the evaluation exercise, as well as a comprehensive analysis of the strengths, areas for improvement and other barriers in both the ERN system and the evaluation methodology.”
24 European Reference Networks and 836 members completed their first evaluation. The evaluation concluded that the ERN ecosystem is functioning well, delivering on highly specialist work for rare disease patients such as consultations for diagnosis and terhapies, the [...]
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Welcome and introduction – Dr Senthil Senniappan (Liverpool, UK) – ESPE Connect Webinar Convenor
Monogenic diabetes mellitus – Dr Kashyap Patel (Exeter, UK)
Neonatal diabetes mellitus – Professor Jacques Beltrand (Paris, France)
Rare syndromic forms of diabetes mellitus – Professor Timothy Barrett (Birmingham, UK)
Panel Discussion and Q&A for all talks – All faculty
Webinar Close – Dr Senthil Senniappan
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As we approach the end of 2024, we also approach the next Continuous Monitoring exercise that will take place between January and February 2025.
Before the end of the year there are 2 key things every Endo-ERN member should check:
Is your
e-REC up to date with all new patients recorded?
e-Reporting of Rare Conditions (e-REC) (lumc.nl) Have you any other Endo-ERN activities to complete and be scored on?
HCP Performance Member Advice – Endo-ERN
If you want support in any of this please contact our Endo-ERN project mailbox.
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