MEDICAL

Other Rare Bone Diseases than OI: FOP

Because some of the other rare bone conditions are very rare or very little known, OIFE can play a role in creating awareness and spreading information about these conditions, which very often have a lot of commonalities with OI. This is why we have started a column about other rare bone conditions, where we will…

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ADVOCACY

Other rare bone conditions than OI – MO

Interview with Liana la Forgia, volunteer and a member of the scientific board of A.C.A.R. Aps, the Italian patient association for Multiple Osteochondromas (MO) OIFE has for many years had a project called “A stronger BOND between us”. The goal behind the project is to further develop an informal network between different stakeholders working on…

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CONFERENCES

OIFE at RBD Summit

On December 6th three representatives from OIFE took part in the first edition of the Rare Bone Disease (RBD) Summit: Oliver Semler Ingunn Westerheim Inger-Margrethe Stavdal Paulsen On December 14th we will attend the second half of the two half-day multi-stakeholder meeting. The RBD (Rare Bone Disease) Summit is a global multi-stakeholder group meeting that aims to provide a platform…

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