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 disorders and to develop guidelines for these disorders. Prof. Natasha Appelman-Dijkstra was interviewed by the LUMC about the ambitions for the upcoming years.

European Reference Networks (ERN)

30 million people in Europe have a rare disease. Because of [...]

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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 that sheds light on the prevalence and management of venous thromboembolism (VTE) in patients with Cushing syndrome, a condition characterized by excessive cortisol production.

Key Findings Patient Sample: The study surveyed 222 patients diagnosed with Cushing syndrome across various European centers. Thromboprophylaxis [...]

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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 Appelman-Dijkstra aims to advance research and education in this critical field, working alongside LUMC’s esteemed faculty and the biomedical students of Leiden University.

Professor Appelman-Dijkstra brings a wealth of expertise to her new position, with a particular focus on Rare [...]

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Leiden, Netherlands – Elise Roeleveld, a medical student at Leiden University Medical Centre (LUMC), has recently completed a notable research internship at the European Registries for Rare Endocrine and Bone Conditions (EuRREB). Her work focused on pituitary adenomas, a rare type of endocrine tumor.

During the initial phase of her internship, Elise meticulously entered patient data into the pituitary module at two prominent Dutch centers: LUMC and Amsterdam University Medical Centre (AMC). In collaboration with Loren van der Hoeven, a [...]

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Celebrating Success!

Our EuRREB Symposium 2024 was a great success! Held on Monday April 22^nd at the Radisson Blu hotel in Milan, Italy, it was an incredible gathering of passionate individuals dedicated to advancing research and improving the quality of patient care in rare endocrine and bone conditions. Our EuRREB symposium 2024 was attended by 90 people (nearly 60 people in person and over 30 people online) from 22 different countries and made the event a resounding success!

Dissemination

Please [...]

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We are excited to announce our most advanced release of the e-REC platform dashboard so far! Check out our newest features after our recent e-REC platform dashboard update. We now show the counting cases per general condition group of the electronic REporting of new Conditions (e-REC) platform on the homepage of the login site. Special thanks goes to Mariya Cherenko, our Data Manager, Ana Priego Zurita, our Quality Manager, and to our platform developer Mihai Bulaicon for [...]

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On behalf of the Osteogenesis Imperfecta Study Group within the Core Registry platform we invite you to participate in the upcoming “Pain Study in Osteogenesis Imperfecta (OI).” This initiative seeks to comprehensively evaluate chronic and acute pain experiences and assess the effect of various treatments among patients diagnosed with Osteogenesis Imperfecta.

Your involvement in this study is pivotal to its success. We invite you to contribute to the Core Registry by providing essential patient information, along with [...]

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