ADVOCACY

The European Registry for Rare Bone & Mineral Conditions (EuRR-Bone)

Interview with Natasha Appelman-Dijkstra M.D. Ph.D., Leiden University Medical Center (LUMC), Netherlands Who are you and what is your relationship to OI? I am Natasha Appelman-Dijkstra internist-endocrinologist in Leiden University Medical Center and specialized in Bone and Mineral Disorders and thus treating patients with OI. I have worked in the Leiden University Medical Center (LUMC)…

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Logo Brittle Bone SocietyCONFERENCES

How to fill the knowledge gaps in OI

On September 4th the Brittle Bone Society had their annual conference online. OIFE was represented by Ingunn Westerheim, who gave a talk together with Dr Laura Tosi and Tracy Hart from the Osteogenesis Imperfecta Foundation on how we can fill the many knowledge gaps we have in OI. The talk tried to explain how people…

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RESEARCH

Physical Function & Soft Tissue Health in OI

Interview with Dr. Alex Ireland and Dr. Sergio Orlando Who are you and what is your relationship to OI? My name is Dr Alex Ireland, Senior Lecturer in Physiology at Manchester Metropolitan University, UK. My research has previously focused on how the shape and structures of our bones and joints is affected by physical activity…

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EDITORIALS

The Voice of People with OI

February’s OIFE Magazine main topic is research and I could have called this editorial “The patients’ voice”. But to be honest, I’m not too fond of the term patients. Patients belong in hospitals. The OIFE represents people with OI and families, who most of the time live active and meaningful lives outside hospital walls. There…

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