Recordati Rare Diseases Foundation is hosting a European Society of Endocrinology (ESE) endorsed course that is suitable for endocrinologists, nuclear medicine, physicians, pathologists, and oncologists.
Taking place in Milan, Italy, 6-8 November, 2025 this is an in-person meeting.
Scientific Organising Committee:
Prof. Wouter de Herder – Erasmus Medical Centre, Rotterdam, Rotterdam, The Netherlands Prof. Diego Ferone – IRCCS Ospedale Policlinico San Martino, University of Genoa, Italy Prof. Vera Popovic-Brkic – Professor of Internal Medicine/Endocrinology, Medical Faculty, University of Belgrade, Serbia Prof. John Wass – Department of Endocrinology, University of Oxford, UK
Format: small groups for enhanced interactivity, networking [...]
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European Rare Disease Research Alliance (ERDERA) invite you to share your expertise to help determine which factors matter most – from unmet medical needs to psychosocial impact and research readiness. Your input will ultimately directly influence future research finding and therapeutic innovation for are diseases. Developing Prioritising Cristeria for Advanced Therapies for Rare Diseases – Guiding ATMP Development Through Structured Criteria
You can find below:
survey link A
short video and
PPT explaining the project and the rare disease prioritisation framework The
Detailed Framework It will take [...]
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The 4th International Workshop on Klinefelter syndrome with the theme: A lifelong journey: new answers to old questions will be held 8-10 October 2025 at the Padova Botanical Garden, University of Padova – UNESCO World Heritage Site.
You will find an overview of the event here and registration information here.
The International Scientific Committee is:
Alberto Ferlin, Italy
Claus Gravholt, Denmark
Anders Juul, Denmark
Armin Raznahan, USA
Anne Skakkebæk, Denmark
Hanna Swaab, The Netherlands
Nicole Tartaglia, USA
Sophie van Rijn, The Netherlands
Joachim Wistuba, Germany
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Dates: Monday 20 and Tuesday 21 April 2026
Location: Athens, Greece
Programme: Start: Monday, 20 April 2026 9:00 starting with SC/AB Meeting followed by general programme at 10:30.
End: Tuesday, 21 April 2026 at 13:45 ending with Farewell Lunch
We are very much looking forward to gathering once again in person with all Endo-ERN members.
If there is anything specific you would like to see included in the programme, please let us know by contacting the project office. We are happy to take your suggestions into account during the planning phase.
For now, we kindly ask [...]
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Another significant milestone in ERN history – CPMS 2.0 mobile app now available for download in the Android and Apple stores. This will increase the convenience of CPMS 2.0 use and the app is enhanced with several new features including:
advanced search audit logs enhanced meeting agendas improved user experience for assistants and admins.
If you are not yet using CPMS 2.0 for #virtual consultations now is the perfect moment to sign up and get started sharing or accessing expertise across the network.
Check out the available manuals and guides including a really [...]
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Please register for this planned webinar Wednesday, 29 October at 17:00-18:00 (CET).
This webinar will cover the recommendations in-depth from one of the lead authors Dieter Haffner, Department of Paediatric Kidney, Liver, Metabolic and Neurological Dieases, Hannover Medical School, Hannover, Germany.
This event will be chaired by Corinna Grasemann, Paediatric Endocrinologist, University Medical Center Mainz, Germany.
You can find the publication of the Clinical Practice recommendations for the diagnosis and management of X-linked hypophosphataemia here.
There will be an opportunity to ask questions at the end of the presentation. If you [...]
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The European Registries for Rare Endocrine and Bone Conditions (EuRREB) has launched a new initiative: the EuRREB Participating Centre Voucher. This voucher will give financial support to either new, eligible centres to become an active center in the registries (Center Start-Up Voucher), or to already active centres to be able to contribute to one of the EuRREB studies (Advanced Centre Voucher).
Centre Start-Up Voucher
For new centres, who are not active in the Core Registry €500 per centre €250 after receiving ethics approval €250 after uploading 100 cases into the Core Registry Once a year, 6 centres (3 Endo-ERN members, [...]
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Our colleagues in the European Registries for Rare Endocrine and Bone Conditions (EuRREB) are excited to announce that the Langerhans Cell Histiocytosis (LCH) module is now live on the Core Registry platform.
This condition-specific module activates automatically once a patient with LCH is entered into the system- making data collection seamless and efficient.
What does the module include?
Clincial features (disease activity, biopsy results, genetic testing, organ improvement) Medical treatment (past and current) Malignancies & comorbidities Patient-reported outcomes via EQ-5D
The full data dictionary is available for download and more information [...]
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This publication from our EuRREB colleagues, Developing a Standardised Dataset for Natural History Studies in Fibrous Dysplasia/McCune-Albright Syndrome (FD/MAS), is a key milestone in improving clinical research and care for people living with FD/MAS. By establishing a harmonised dataset, we aim to support international collaboartion, enable meaningful data comparisions, and drive forward patient-centered research.
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REGISTER now to attend the virtual event of the well-known SDMregistries meeting. Planned for Thursday, 12 June – Friday, 13 June, 2025. Starting at 10:30 BST and ending 17:00 BST this 2 day event will feature several speakers from the Endo-ERN network. Topics include:
Surgical solutions for delayed genitoplasty Gender identity in individuals with DSD The clinical presentation and diagnosis of AIS
The event will feature live break-out rooms, presentations and several recorded expert talks. View the full programme.
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