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The headline for this month is the Clinical Exchange Programme Now Open. If your institution is a member of an ERN you are eligible to apply for a 5-day clinical exchange. Applications close 30 November for 2025 exchanges. Check out the criteria on our website. You will find the full list of webinars below but we draw your attention to a just added webinar on Monday, 21 October APS1/APECED: A Treatable IFN-y-opathy featuring Prof Mihail Lionakis of the NIH. As always, if you cannot make it live, register and you will receive a recording. Enjoy the read! Endo-ERN team
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VISIT: European Commission visits Amsterdam UMC & Endo-ERNThe Endo-ERN project office at Amsterdam UMC was delighted to welcome Donata Meroni and Nichola Larkins from the European Commission earlier this month. Colleagues from the ERN and rare disease community in the Netherlands joined over the 2 days. We were honored that Hans van Goudoever, Amsterdam UMC CEO opened the afternoon, followed by ERN coordinators Arthur Wilde, ERN GUARD-Heart and Alberto Pereira Arias, Endo-ERN, and Petra Zwijnenburg from the Amsterdam UMC rare disease office. Floor Halvorsen, Dutch Ministry of Health introduced the rigorous process required to become an expert centre in the Netherlands and Cor Oosterwijk, National Patient Alliance for Rare and Genetic Disorders showed how long Dutch patients have been advocating for high-quality rare disease care. Simone Louisse, Hart4Onderzoek shared her experience as an ERN ePAG as did Nicole Wolf an active clinical member of ERN-RND. Evidence-based medicines is at the heart of all ERNs and Ronald Cornet, Professor Amsterdam UMC discussed the importance of FAIR data particularly in rare disease. An informative day all around! |
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REGISTER: Upcoming webinarsEndo-ERN experts continue to deliver informative webinars that increases the expertise in the network. Register now for these upcoming webinars. Remember if you cannot attend live, register anyway and you will receive a recording. APS1/APECED: A Treatable IFN-y-opathy ESE Talks...Genetic endocrine tumours with a focus on pancreatic neuroendocrine tumours (NETs) The new genetics of Turner syndrome webinar Care of adult patients with Klinefelter syndrome |
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CHANGES: MTG7 chair changesA recently confirmed change to MTG7. Endo-ERN would like to thank Luca Persani for his support and dedication during the formative years of the network as he steps down as MTG7 chair. Luca will still be involved with Endo-ERN on the Advisory Board as the national coordinator for Italy. To the new chair Claus H. Gravholt we say welcome and good luck in your new position. |
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NEW PARTNER: Welcome ERDERAEuropean Partnership Opens a New Era in Rare Disease Research The European Rare Diseases Research Alliance (ERDERA) kicks off this September, with an estimated budget of 380 million euros and the aim of |
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UPCOMING: 62nd Annual ESPE Meeting, 16-18 November, Liverpool, UKThe 62nd Annual European Society for Paediatric Endocrinology (ESPE) will take place 16-18 November in Liverpool, England. The Endo-ERN project office will attend and host a booth and a symposium. The symposium will take place Sunday, 17 November 1430-1600 in Hall 3.
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