Slide showine group Photo of the OIFE boardMEMBERS

OIFE Leadership Meeting

Our annual Leadership meeting for our member organizations took place on February 27th on Zoom. 23 organizations were represented from 21 different countries around the world, which is great. In total we were 48 people attending.
The meeting covered news from OIFE, including how and why we work with industry, clinical trials, our Stronger Together project which includes a conference for dedicated volunteers in Valencia, Spain in September. It also provided some tips on how our organizations can take advantage of awareness days like Rare Disease Day.
Slide showing news from the OIFE

Different examples from our member organizations were also presented, including the Adult Health Toolkit from the Osteogenesis Imperfecta Foundation, the new care pathway and RDCN for Adults with OI from the Brittle Bone Society and rehabilitation and pain projects in Norway presented by Norsk Forening for Osteogenesis Imperfecta (NFOI). We thank all the contributors for making it an informative meeting.

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