RESEARCH

OI Parents for OI Panels

Are you a parent of one or more children or adolescents with OI? Would you like to help the OIFE with focus groups and panels hosted by researchers, companies or other stakeholders working to improve care and treatment for children with OI? Can you communicate in English? OIFE is more and more often asked to find parents…

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OIFE

OIFE MAB-meeting on Key4OI & EuRR-Bone

Friday the 19th the Medical Advisory Board (MAB) of OIFE came together for their 2nd meeting in 2020. The topics included Key4OI and the new rare bone registry EuRR-Bone. In addition to the OIFE MAB, we had invited the OIFE EC, our resource group on registries and Tracy Hart from the OI Foundation. In total…

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