ICCBHCONFERENCES

Call for abstracts ICCBH Virtual Forum

ICCBH Virtual Forum: “Bone Fragility Disorders in Children” Abstract submission for the ICCBH Virtual Forum on Bone Fragility Disorders in Children is now open. The scientific programme and other details can be viewed on the meeting website. Time & venue: November 18-20th 2020 ONLINE. Abstract deadline: 1 October 2020 Abstract submissions and clinical cases are invited.…

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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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RESEARCH

Rare Disease Research Challenge

The European Joint Programme on Rare Diseases (EJP RD) brings over 130 institutions (including all 24 ERNs) from 35 countries. On March 3rd Dace Liepina and Ingunn Westeheim was supposed to represent OIFE at a networking event in Paris related to the Rare Diseases Research (RDR) Challenges Call. We were particularly interested in challenge nr. 3 “Characterize Rare…

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