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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The Alström Syndrom e.V. invites you to a benefit concert in Landau-Wollmesheim, Germany on Friday, 12 July, at 5.00 pm.
Alström syndrome is one of around 8000 rare diseases. The association is committed to networking the few people affected, for better medical care and for more awareness of all rare diseases. Proceeds from the concert will help to achieve these goals. Above all we want to celebrate life and are looking forward to a wonderful summer evening with great live music!
The Frankenthal duo Sillis will be performing refined acoustic rock’n’pop with two voices, a guitar and a violin. In [...]
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Save the date for the 64th ESPE 8-10 September, 2026 to be held in Marseilles, France.
More information will be available closer to the event.
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Attention Endo-ERN representatives! You are invited to participate in this important two-year project to develop a new ESE position statement: Self-management and support services for patients with Adrenal Insufficiency (AI).
This two-year project aims to:
Evaluate factors that influence self-managment for patients with AI (international cross-sectional survey adapted and translated in several languages) Explore current patient educaiton approaches and support services across Europe Develop an evidence-based Euorpean Position Statement using Delphi research methodology
You are invited to participate as a:
Principle Investigator to recruit patients with AI from your centre or country Patient advocacy group representives to disseminate the survey [...]
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Great news! Endo-ERN ePAG Johan de Graaf has been elected to EURORDIS Board of Directors during the organisation’s annual General Assembly 2024. Wishing you success Johan!
The full report on the EURORDIS website stated the following:
The elections saw the appointment of six members to the Board, including four re-elected and two newly elected members.
Avril Daly, Chief Executive Officer of Retina International, was re-elected to the Board. Following a meeting of the EURORDIS Board of Officers (taking place after elections) to the Board of Directors, Avril has been confirmed to continue as President [...]
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