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…
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…
In January, hosted by the Osteogenesis Imperfecta Foundation, the Adult Health resource group initiated by Dr. Eric Orwoll were gathered in Orlando, Florida to write what will be their 3rd paper together. The Delphi process study* will review the current literature related to the risk of and follow up for cardiovascular disease in OI. The…
Interview with Dr. Winnie Liu, Oregon Health and Science University (OHSU), Portland, Oregon, USA Dr. Winnie Liu is an adult endocrinologist and takes care of patients at Oregon Health and Science University (OHSU) located in Portland, Oregon. Her clinical and research interests are metabolic bone disease with a focus on OI after joining the BBDC (Brittle…
Interview with Dr. Michael T, University of Hong Kong and Shenzhen In most countries, pediatric surgeons are not allowed to operate on adults with OI because of the way hospitals are organized. Usually, the surgery is performed by an adult physician who knows about one body part (like hip, fingers, knee, pelvis etc). What are…
Interview with Dr. Guus Janus, ISALA Treatment Center Zwolle, The Netherlands In most countries, pediatric surgeons are not allowed to operate on adults with OI because of the way hospitals are organized. Usually, the surgery is performed by an adult physician who knows about one body part (like hip, fingers, knee, pelvis etc). What are…
Interview with Dr. Jeanne Franzone, Nemour’s Children’s Hospital, Wilmington, USA In most countries, pediatric surgeons are not allowed to operate on adults with OI because of the way hospitals are organized. Usually, the surgery is performed by an adult physician who knows about one body part (like hip, fingers, knee, pelvis etc). What are the…
OIFE’s peer group Adult Health & OI is a closed Facebook-group for adults who have OI (English language only). We welcome participants from all countries, as long as you can communicate in English. A closed group means that only people who have been accepted by the moderators and who are part of the group can…
TOPaZ is a randomised open-label clinical trial for people with osteogenesis imperfecta (OI). The study aims to investigate whether a two-year spell of treatment with a drug called teriparatide (TPTD) followed by treatment with another drug called Zoledronic acid (ZA) reduces the risk of broken bones occurring in people with OI. The TOPaZ trial receives…
