The Endo-ERN covers under its umbrella a broad range of endocrine disorders, and a significant number of these entities are caused by genetic variants. The underlying disorders are commonly rare and research, diagnostic testing and treatment are fragmented. Clinically, the disorders covered by Endo-ERN are heterogeneous, as are their genetic basis.
However, the genetic mechanisms behind the disorders as well as the genetic testing strategies are very similar. The last years have seen considerable improvement of genetic testing and – as a consequence – of the development and implementation of personalized treatment strategies.
The need to implement and run [...]
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July 2025 The survey is now closed and the research complete.
Walden University in Minneapolis, Minnesota, USA has a new study about the experiences of managing and living with autoimmune Addison’s disease in the younger and newly diagnosed adults. Researcher Mathew Horodner is seeking English speaking patients aged 18-30 for a video interview that will audio-recorded.
The criteria has been expanded and you may now qualify to particpate. Check out the new flyer or contact researcher Mathew Horodner.
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Register now for this European Society of Endocrinology (ESE) endorsed course being held 17-19 October Stockholm, Sweden.
This event is a postgraduate course aimed at adult and paediatic endorcinologists both trained and in training. You can expect expert-led small groups for enhanced interactivity, networking and sharing of experiences, workshops, debates, and case presentations by attendees.
Scientific Organising Committee
Prof. Olle Kämpe – Center of Molecular Medicine, Karolinska Institute, Stockholm, Sweden Prof. Eystein Sverre Husebye – Department of Clinical Science, Haukeland University Hospital-University of Bergen, Bergen, Norway Prof. Vera Popovic-Brkic – Professor of Internal Medicine/Endocrinology, Medical Faculty, University of Belgrade, [...]
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The new CPMS 2.0 system went live 31 May, 2024.
For the next few months Endo-ERN will continue to use the original CPMS, as we start preparation for a network-wide migration to the new CPMS 2.0 system. Existing users will automatically have an account in the new system once data migration occurs, using their same login details for EU login. If you want to test the system ahead of our network’s formal migration, please contact our helpdesk.
With the new system comes formal steps for each of our member HCPs. The new system security documentation will be shared [...]
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Exciting News! The EJP RD course “Innovative Therapies and Personalized Medicine for Rare Diseases” is officially live! Explore cutting-edge advancements in gene therapy, regenerative medicine, and beyond. Be a part of the revolution in rare disease treatment! Enroll now.
This course is a free course until Monday, 12 August.
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The aim of the survey is to identify needs and priorities of academic stakeholders involved in clinical trials, integrating them into the work of ACT-EU. It seeks to address challenges in conducting clinical trials in the EU faced by ERNs and academics, highlight topics needing further clarification or discussion, and propose solutions for improving and accelerating clinical trials. Academic stakeholders are encouraged to contribute ideas for improvement across various aspects of clinical trial governance and implementation, clinical trial methodologies and data analytics, regulatory processes, safety monitoring, training, and emergency preparedness.
Please make your contribution to the survey [...]
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REGISTER for the 16th ESPE Connect Webinar – Rare Thyroid Conditions
Thursday 17 October, 2024
Time: 1600-1730 (CEST)
16:00 – Welcome and introduction Professor Anne Rochtus (Leuven, Belgium) – ESPE Connect Webinar Convenor
16:05 – Thyroid Hormone Resistance (A & B) Professor Carla Moran (Dublin, Ireland)
16:25 – MCT8 deficiency Professor Edward Visser (Rotterdam, The Netherlands)
16:45 – Patient/Parent testimony: Unmet needs in Rare Thyroid Disorders Speaker TBC
17:05 – Panel Discussion and Q&A for all talks All faculty – also joining the panel discussion is Dr Krishna Chatterjee (Cambridge, UK)
17:30 [...]
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The 4th ERICA General Assembly & ERN Research Conference will take place from 11-13 December, 2024 in Udine, Italy.
Hosted by MetabERN.
The aim of the ERICA consortium, 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 Conference serves as a great opportunity to ‘meet and greet’ the active ERN research community, to present the research projects involving ERNs and to discuss [...]
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Register now for the next MTG2 webinar upcoming on Tuesday, 24 September at 1700 CEST.
The event will be chaired by: Professor Christina Kanaka-Gantenbein, Athens Greece & Professor Agnes Linglart, Paris France
Programme outline
– Introduction of Hypophosphatemia as a result of fibrous dysplasia, with main focus on McCune Albright Syndrome, Professor Luisa de Sanctis, Torino, Italy
– Presentation of cases with fibrous dysplasia and hypophosphatemia treated with Burosumab, Dr Sophia Sakka, Athens, Greece
– Fibrous dysplasia- management and new treatments, Dr Alison Boyce, Bethesda, USA
There will be a Q&A after the presentations. You are encouraged [...]
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