Latest
News
New EuRREB Publication: Standardised Dataset Natural History Studies in FD/MAS
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)
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 and...
CALL: Abstracts for ESPE-OSCAR Science Symposium, 18-19 September, Paris, France
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....
January Newsletter
Want to stay updated with the latest EuRREB news? Read our January Newsletter. You can also subscribe to receive our updates twice a year - in January and June!
Collaboration with ERN-EuroBloodNet for Langerhans Cell Histiocytosis
EuRREB is currently creating a module for endocrine and bone complications in Langerhans Cell Histiocytosis in collaboration with the ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases). Langerhans Cell Histiocytosis is a haematological...
New Participating Centres website page
Now showcasing all our Participating Centres on our website! We are excited to introduce our new Participating Centres on our website. This new page provides a comprehensive overview of all the contributing centres and their participation in our different platforms,...
New EuRREB Publication: ERN BOND & EuRR-Bone – their role in governance of rare disease management
We are excited to share our latest publication: [link-to-publication id=1122 org='Publ: The Role of the European Reference Network for Rare Bone ...'] In this comprehensive review, we delve into the pivotal role of ERN BOND and...
European grant for the database for rare endocrine and bone disorders
The Leiden University Medical Center (LUMC) receives an European grant for the database for rare endocrine and bone disorders. The LUMC Endocrine department was granted 1.7 million by the European Commission to further develop the database for rare endocrine and bone...
New EuRREB Publication: Venous Thromboembolism in Cushing Syndrome
We are pleased to announce the release of a comprehensive new EuRREB publication: "Venous Thromboembolism in Cushing Syndrome: Results from an EuRRECa and Endo-ERN Survey". This new EuRREB publication: "Venous Thromboembolism in Cushing Syndrome" is pivotal research...
Leiden University Medical Center appoints Professor Dr. Natasha Appelman-Dijkstra
As of 1 June 2024, the Leiden University Medical Center (LUMC) is pleased to announce the appointment of Professor Dr. Natasha Appelman-Dijkstra as Professor of Internal Medicine, specializing in Bone and Mineral Conditions. In her new role, Professor...