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June Newsletter

June Newsletter

by Jacqueline van der Blom | Jun 24, 2025 | General

Want to stay updated with the latest EuRREB news? Read our June Newsletter. You can also subscribe to receive our updates twice a year – in January and...
New EuRREB Publication: Standardised Dataset Natural History Studies in FD/MAS

New EuRREB Publication: Standardised Dataset Natural History Studies in FD/MAS

by Jacqueline van der Blom | May 8, 2025 | General

EuRREB is proud to share the latest outcome of an international collaboration to improve research and care for patients with rare bone diseases. A new paper has been published describing the development of a core dataset for natural history studies in Fibrous...
New Module Launch: Langerhans Cell Histiocytosis (LCH)

New Module Launch: Langerhans Cell Histiocytosis (LCH)

by Jacqueline van der Blom | May 8, 2025 | General

We 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...

Developing a Standardised Dataset for Natural History Studies in Fibrous Dysplasia/McCune-Albright Syndrome

by Jacqueline van der Blom | May 8, 2025 | Publication

Background Fibrous dysplasia/McCune-Albright syndrome (FD/MAS) is a rare and complex condition caused by somatic variants in the GNAS gene, leading to a wide clinical spectrum. The diagnostic process and therapeutic pathways vary across centers, highlighting the need...
CALL: Abstracts for ESPE-OSCAR Science Symposium, 18-19 September, Paris, France

CALL: Abstracts for ESPE-OSCAR Science Symposium, 18-19 September, Paris, France

by Jacqueline van der Blom | Mar 13, 2025 | General

Call for abstracts is now open for the upcoming European Society for Paediatric Endocrinology (ESPE) and French rare diseases healthcare network (OSCAR) being held 18-19 September in Paris France. Late-breaking abstract submission deadline 27 April, 2025, 23:59 CET....
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Room C7-57, route 222
Albinusdreef 2
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