LAUNCH OF EURR-BONE
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 in collaboration with the EuRRECa project (European Registries for Rare Endocrine Conditions).
EuRR-Bone will cover rare bone and mineral conditions the European Reference Network on Rare Endocrine Conditions (Endo-ERN) as well as the European Reference Network on Rare Bone Disorders (ERN BOND). EuRR-Bone will be of service to all patients, health care professionals and researchers involved in the care of people with rare bone and mineral conditions.
EuRR-Bone will be one of the main topics on the agenda on the 2nd meeting of OIFE’s Medical Advisory Board (MAB) on June 19th.
Read more about EuRR-Bone here: