MEDICAL

Book about OI – now in English

Researchers from the Share4Rare project in Spain published a book about osteogenesis imperfecta (OI) some years ago. Now it’s available online (for free) in English language as well. The Spanish organization Ahuce also provided input to the book. You can access the book by clicking here.  

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nick giving talkMEDICAL

Interview with Prof. Nick Bishop

Interview with Nick Bishop, professor of paediatric bone diseases at the University of Sheffield, UK Who are you and what is your relationship to OI? My name is Nick Bishop and I am professor of paediatric bone diseases at the University of Sheffield in the UK. I’ve worked here for the last 25 years (nearly).…

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Raul looking tiredMEDICAL

OI & Disability Burn-Out

“Disability Burn-Out”: Internalized Ableism and its consequences! By Raul Krauthausen, disability activist with OI A disability can be stressful and sometimes trigger burnout. Often, one’s own internalized ableism plays a major role – in other words, the pressure of having to gain a raison d’être through performance and functionality. This can rule a lifetime. It…

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logo IMPACT surveyMEDICAL

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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Graphic cartoon from pooping videoMEDICAL

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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