MEDICAL

Care pathways & Adult OI Networks in the UK

Written by Patricia Osborne CEO of Brittle Bone Society and Professor Kassim Javaid When adults with rare bone conditions turn 18 they mostly have no dedicated adult clinics or services to transition to. Because of an initiative from the BBS, there is now an official Rare disease collaborative network (RDCNs) established for adults with different rare…

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MEDICAL

Newborn Screening Programme in UK

Interview with Meena Balasubramanian My name is Meena Balasubramanian. I am a clinician-scientist specialising in bone genetics at the University of Sheffield and Sheffield Children’s Hospital in the UK. I have worked in Sheffield over the last 15 years. I started here as a Clinical Genetics trainee having previously worked as a paediatrician and did my…

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Painting Shows child and rainbowMEDICAL

The Dream machine: How to deal with pain in children

At the “Balancing Life with OI” conference, Kelly Thorstad from Shriners Hospitals for Children – Canada in Montreal, shared their strategies on how to deal with pain in children with OI. The talk included some information about the therapeutic children’s book Dream Machine. See more information about the book and interviews with several known OI-professionals…

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Graphic data from the Impact surveyMEDICAL

Adult Health resource group

Interview with Eric Orwoll, Professor of Medicine, Division of Endocrinology, Diabetes and Clinical Nutrition, School of Medicine and Dr. Lars Folkestad, member of OIFE’s Medical Advisory Board Due to common interests in adults with OI, Prof. Eric Orwoll and Dr. Lars Folkestad identified researchers and clinicians who have worked on adult care and formed a…

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MEDICAL

Other Rare Bone Diseases than OI: FOP

Because some of the other rare bone conditions are very rare or very little known, OIFE can play a role in creating awareness and spreading information about these conditions, which very often have a lot of commonalities with OI. This is why we have started a column about other rare bone conditions, where we will…

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MEDICAL

Adult Health Toolkit

NEW RESOURCE FOR ADULTS WITH OI Check out the new resource from our friends in the USA, which in our opinion must be the best thing since sliced bread: “The Adult Health Toolkit” made by the Osteogenesis Imperfecta Foundation is: “Information for Adults Living with OI, Their Families, and Medical Professionals” to help you navigate…

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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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