We’re inviting women with osteogenesis imperfecta (OI), age 35 and older, to take part in a new survey focused on menopause and OI. This project is part of the OIF Adult Health Initiative and is being conducted through The Global Adult OI Initiative, an international collaboration of OI clinicians, researchers, and patient advocacy partners, including contributors…
As Ingunn wrote in her editorial, in 2026 we are organizing a topical meeting in Copenhagen about phases of adult life with OI – including getting older with OI. The meeting will be held from June 18 to 21 in Scandic Strandpark hotel, close to Copenhagen international airport. What kind of topics would YOU like…
We are proud to share the newest article from the IMPACT survey, that was recently published: “The humanistic impact of osteogenesis imperfecta in adults”. It covers topics like: – How does OI affect the quality of life of adults with OI? – What are the drivers of impact on quality of life? – What do…
Written by Patricia Osborne CEO of Brittle Bone Society and Professor Kassim Javaid When adults with rare bone conditions turn 18 they mostly have no dedicated adult clinics or services to transition to. Because of an initiative from the BBS, there is now an official Rare disease collaborative network (RDCNs) established for adults with different rare…
Interview with Eric Orwoll, Professor of Medicine, Division of Endocrinology, Diabetes and Clinical Nutrition, School of Medicine and Dr. Lars Folkestad, member of OIFE’s Medical Advisory Board Due to common interests in adults with OI, Prof. Eric Orwoll and Dr. Lars Folkestad identified researchers and clinicians who have worked on adult care and formed a…
