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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The European Pediatric Differentiated Thyroid Carcinoma (ped-DTC) Study Group proudly announces the launch of its specialized module. This module, initiated in January 2024, aims to advance understanding and treatment outcomes for pediatric patients diagnosed with thyroid cancer.

Pediatric DTC is a rare disease, making it challenging for individual study sites to gather sufficient clinical data for conclusive research. In response, EuRREB is fostering collaboration among multiple institutions across Europe to compile comprehensive datasets.

Key Objectives of the Module include:

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This condition specific module was launched in October 2023 and is the work of the Gender Incongruence Study Group.

The access to transgender healthcare, especially for children and adolescents, varies extremely across Europe, depending on where they live. In some countries, it is even virtually impossible.

This condition-specific module is aiming to collect some basic information in order to map transgender healthcare across Europe, to analyze the trends and hopefully to deliver a better and more homogeneous care [...]

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Our website is now accessible to accommodate all visitors and users, including people with disabilities. Our website visitors who are visually impaired can use our new accessibility tool. Click on the accessibility icon in the top right corner of our website and check out the new features to make reading our website effortless.

Also enjoy reading our website in one of the main global languages available through our new translation tool (top right corner of our website).

Note: [...]

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