REGISTER: Webinar on the Clinical Practice recommendations for the diagnosis and management of XLH
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 [...]
APPLY: EuRREB Participating Centre Voucher
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, [...]NEW: EuRREB condition-specific modules
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-5DThe full data dictionary is available for download and more information [...]
NEW: EuRREB publication
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.
European Registries for Rare Endocrine and Bone conditions (EuRREB) Update
REGISTER: SDMregistries Virtual Meeting 2025
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 AISThe event will feature live break-out rooms, presentations and several recorded expert talks. View the full programme.
Endo-ERN GA: Summary
Endo-ERN co-coordinators Alberto Pereira and Olaf Hiort welcomed 143 representatives from 93 reference centres, as well as 13 ePAGs in Copenhagen for the Endo-ERN General Assembly (GA). Taking place Friday, 9 May and Saturday, 10 May just before the start of the Joint Congress of ESPE and ESE. This is a short summary of the work package presentations and if you click on the presentation title you can download the full presentation. The MTG slides are available as well – click on the session title. If you have any questions please contact the Endo-ERN Project Office.
Endo-ERN Training & Education May
SAVE THE DATE: International Consortium for Fibrous Dysplasia and McCune-Albright Syndrome (ICFDMAS)
Upcoming 25-26 October in Madrid, Spain the ICFDMAS Consortium Meeting. There is a preliminary Programme available put together by local organizers. In addition the program accomondates time for selected oral presentations as they would like to stimulate early career researchers and students to send in their abstracts. The deadline for submission is 25 August 2025. Check out the website for more information.
