RESEARCH

New article with OIFE co-authors published

We are happy to announce that another scientific article where patient representatives from OIFE have contributed, has been published on May 3rd, 2024. This paper describes an innovative initiative that is called Project SATURN: Systematic Accumulation of Treatment practices and Utilization, Real world evidence, and Natural history data for the rare disease Osteogenesis Imperfecta. Hopefully…

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Graphic showing bars and linesMEDICAL

Registry Research in Denmark

My name is Lars Folkestad. I am an associate professor and staff specialist at the department of endocrinology at Odense University Hospital. There I am part of the team that follows and cares for adults with OI. We are aiming towards a multi-disciplinary approach to our outpatient OI clinic visits, but most of our efforts…

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EDITORIALS

More than just a survey!

We know you hate surveys. We truly do. Every time you buy an object, order take away, online grocery or come home from a holiday, you get a survey. Are you happy? Unhappy? Do you have something to complain about? Would you like to recommend our app? Do a review? Please, please, please provide us…

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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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EVENTS

OIFE AGM on Zoom – a success

Each year all delegates are invited to the Annual General Meeting (AGM) of OIFE, which is normally the only time a year the whole Board comes together. At the AGM the Executive Committee (EC) accounts for OIFE’s activities in the past year, future plans and policies are discussed and members exchange news and ideas. Our…

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