ADVOCACY

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…

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EDUCATIONAL

ECHO – Rare Bone Virtual Clinic Series

Physicians of all specialties, nurse practitioners, physician assistants, and other healthcare professionals with an interest in rare bone conditions are welcome to attend monthly case-based telementoring presentations and discussions. The webinars are primarily for professionals in the US, but professionals from other countries can also ask to join. Presented by OIFE’s partners the Osteogenesis Imperfecta…

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