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...
by Jacqueline van der Blom | Dec 21, 2023 | General
Find out everything there is to know about our e-REC and Core Registry on our: Frequently Asked Questions (FAQ) page. If you still have a question after reading the FAQ’s, please contact us at [mail-main]. In addition to our FAQ page for professionals we also...by sabine | Dec 1, 2023 | Publication
Background Knowledge on the natural history of rare diseases is necessary to improve outcomes. Disease registries may play a key role in covering these unmet needs in the rare bone and mineral community. Objective To map existing bone and mineral conditions registries...by sabine | Nov 20, 2023 | Publication
Objective The European Registries for Rare Endocrine Conditions (EuRRECa, eurreb.eu) includes an e-reporting registry (e-REC) used to perform surveillance of conditions within the European Reference Network (ERN) for rare endocrine conditions (Endo-ERN). The aim of...