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.
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 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.
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.
Check out the programme of this 9th workshop organised by the European NeuroEndocrine Association. The theme of the event is Changing the Paradigms Over 20 Years: A Translational Approach in Pituitary Tumors.
Abstract submission is currently open with the deadline 15 September.
Now open! A facilitation window for the MOOC Diagnosing Rare Diseases: from the Clinic to Research and back is open from Monday, May 12, until Friday, July 4.
You can access the course here.
During this period, experts and mentors will be available online to answer participants’ questions and stimulate insightful discussions throughout the course.
This free online course, developed within the European Joint Programme on Rare Diseases (EJP RD), was co-created by ERN ITHACA, ERN GENTURIS, EURORDIS, and the Fondation Maladies Rares.
The MOOC explores key topics in the diagnosis of rare genetic diseases, including:
[...]Register now for this webinar focused on Cushing’s disease featuring European experts and an Endo-ERN ePAG. Planned for Tuesday, 10 June 16:00-18:00 the webinar will feature the following presentations:
An Update on Cushing’s Disease: Genetics, Diagnosis and Treatment Professor Constantine Stratakis, Athens, Greece Cushing’s Syndrome due to Bilateral Nodular Adrenal Disease Professor Jerome Bertherat, Paris, France Cushing’s Disease from a Patient’s Perspective Ms Marta Baranska, Founder of The Pituitary Gland Association, PolandThere will be time for Q&A with the experts at the end of the presentation. If you are unable to attend live, please register and [...]
Save the date and register now for a webinar from Endo-ERN’s MTG1:
Presentations from Svetlana Lajic MTG1 chair and Anna Nordenstrom chair Endo-ERN’s Clinical Practice work package.
The FIRENDO (Filiere Maladies Rares Endocriniennes) network will award a grant for the period 2025-2027 to fund a collaborative research project between a FIRENDO member organization and an HCP (Health Care Provider, a healthcare institution) that is a member of the Endo-ERN (European Reference Network on Rare Endocrine Conditions) outside France.
The grant aims to stimulate international collaborative clinical, translational, or fundamental research projects between:
A FIRENDO organization (clinical or research laboratory, clinical department, patient association) – see the directory here, and an Endo-ERN member outside France – see the directory here. The project must focus [...]
Endo-ERN will have participate in several aspects of the at the Joint Congress of European Society for Paediatric Endocrinology (ESPE) and the European Society of Endocrinology (ESE) thanks to our partnership with these organisations.
Endo-ERN will host a booth 44&45 with Endo-ERN ePAGs and our colleagues from EuRREB – stop by and find out more about Endo-ERN’s activities. Our colleagues also prepared posters that are worth a view: Creating Patient Journeys within Endo-ERN European patient advocacy group (Endo-ERN) The European Registries for Rare Endocrine and Bone Conditions (EuRREB): Collecting Core Data Elements and Clinician and Patient-Reported Outcomes The European Registries [...]