by Jacqueline van der Blom | Mar 21, 2024 | General
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...
by sabine | Mar 16, 2024 | Publication
The Role of the European Reference Network for Rare Bone Diseases (ERN BOND) and European Registries for Rare Bone and Mineral Conditions (EuRR-Bone) in the Governance of the Management of Rare Bone and Mineral Diseases Abstract Rare diseases (RDs) bear a significant...
by Jacqueline van der Blom | Feb 19, 2024 | General
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...
by Jacqueline van der Blom | Dec 21, 2023 | General
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...
by Jacqueline van der Blom | Dec 21, 2023 | General
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...
