We were two people (Alessandra and Ingunn) who represented OIFE at the 2nd Registries Symposium of the two registries EuRR-Bone (rare bone conditions) and EuRRECa (endocrine conditions) on April 22nd 2024. The Symposium in Milan was attended by 90 people (60 in person and 30 online) from 22 different countries and made the event a resounding success! We got…
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)…
Today was the official launch & kickoff of the the European Registry for Rare Bone and Mineral Conditions (EuRR-Bone), which is funded by the European Union’s Health Programme. OIFE was represented by Rebecca Tvedt Skarberg (ERN BOND ePAG). EuRR-Bone’s aim is to create a high-quality, patient-centered registry for rare bone and mineral conditions including OI…
