As a child, Bruno (56) often suffered fractures without any clear cause. It wasn’t until after his thirties that the diagnosis came, shortly after his daughter was born. OI is an invisible condition with a major impact, Bruno explains. “It was especially tough as a child and teenager. Kids can be really harsh. You constantly…
Your newborn child is finally here, but when you discover that all is not as it should be, what do you do? – When your child is diagnosed with a rare condition, there are so many things that go through your head. OIFE recommends the publication “Guide for parents after diagnosis” to parents after they…
The Osteogenesis Imperfecta Foundation in the US recently announced the educational program OI TeleECHO Clinic Series. The goal is to build capacity to safely and effectively diagnose and treat osteogenesis imperfecta (OI). The program is a partnership with Project ECHO™ (Extension for Community Healthcare Outcomes). This series uses Zoom videoconferencing, and will take place on…
