EuRREB, the European Registries for Rare Endocrine and Bone Conditions consists of the EuRRECa and EuRR-Bone project. The registries are aimed at maximizing the opportunity for all patients, health care professionals, and researchers to participate and use high quality, patient-centred registries. The aim is to be Europe’s most comprehensive and accessible resource for researchers studying…
Interview with Natasha Appelman-Dijkstra M.D. Ph.D., Leiden University Medical Center (LUMC), Netherlands Who are you and what is your relationship to OI? I am Natasha Appelman-Dijkstra internist-endocrinologist in Leiden University Medical Center and specialized in Bone and Mineral Disorders and thus treating patients with OI. I have worked in the Leiden University Medical Center (LUMC)…
The e-REC is an electronic reporting system which captures activity and allows for a better understanding of the occurrence of rare bone conditions incl. OI. The platform is open to ALL centers who see people with OI and other rare bone conditions. WHAT IS EURR-BONE? The EuRR-Bone (European Registry for Rare Bone and Mineral Conditions)…
EuRR-Bone Registry Did you know that there is a European registry on rare bone disorders being developed? It’s called EuRR-Bone and has received funding from the EU. OIFE has two patient representatives involved in the development of EuRR-Bone including the disease specific module on OI. Summer School on Rare Disease Registries To become more knowledgeable…
