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IMPACT survey – filling the knowledge gaps

The IMPACT Survey – how we identified knowledge gaps and created a meaningful survey for the OI-community   The IMPACT Survey was an international research project exploring the real impact OI has on people’s lives. The survey was run by Sam and Maria from the Wickenstones Company – an experienced scientific agency who, OIFE, OIF…

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Bladder and bowel issues in children with OI

Interview with Prof. Gisele Martins, University of Brasilia (UnB), Brazil (main part) and Dr. Argerie Tsimicalis, McGill University, Canada Who are you & what is your relationship to OI? My name is Gisele Martins and I’m a professor of nursing at the University of Brasilia (UnB), Brazil. My involvement with the OI community started seeing…

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InjectionMEDICAL

OI Research Update from Ultragenyx

As you may be aware, the company Ultragenyx is sponsoring a research study, titled Orbit, to determine the safety and efficacy of setrusumab (UX143), for the treatment of OI. The Phase 2 portion of this study was completed in February with 24 patients and they have announced the interim results. Click here to read the full…

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MEDICAL

Surgery of adults with OI – Dr. Michael To

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…

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MEDICAL

Surgery of adults with OI – Dr. Guus Janus

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…

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MEDICAL

Surgery of adults with OI – Dr. Jeanne Franzone

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…

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ADVOCACY

OIFE in Bologna

The OIFE was well represented at the spring meeting of the European Reference Network for Rare Bone Diseases (ERN BOND) in Bologna the first week of May. ERN BOND brings together 53 health care providers (hospitals) that deal with rare bone conditions. 40 people attended face to face and 13 online. In addition to several…

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ERN BOND Workshop on Patient Priorities

The hybrid workshop “Patient priorities in ERN BOND beyond Quality of Life” is organised by ERN BOND – European Reference Network on Rare Bone Diseases and their patient representatives (ePAGs). It will take place on Saturday 6th of May from 9 – 4PM CET. This workshop aims to explore four priorities identified for patients with…

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Toolbox on pain and OI

In March 2023 OIFE started the work of creating a toolbox on pain and osteogenesis imperfecta.  The aim of the toolbox is to enable people with OI to learn more about pain management. It will also include information and tips which you can discuss with your care provider when communicating around pain. What would YOU…

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