MEDICAL

COVID 19 & OI – survey results

Did you know that OIFE was one of the contributors to the Covid-19 and OI survey that the Brittle Bone Society initiated? Now the article has been published in Frontier’s magazine. Background: Research on the effects of the COVID-19 pandemic on people with rare diseases is limited. Few studies compare healthcare throughout the progression of…

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RESEARCH

Help the ERBF!

OIFE is a member of the European Rare Bone Forum (ERBF). A while ago they initiated a project to try to get a better overview of the unmet needs in rare bone conditions – especially regarding research & development: https://rarebone.org/news-rare-bone-diseases/projects/ OIFE promised to support the ERBF project a long time ago – but unfortunately some of…

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OIFE

New Pain and OI survey – Deadline April 1

The OI Foundation and the OIFE have partnered on a new project investigating the experience of pain for people with OI. The following survey investigates the experience of pain for people with OI. This survey is for anyone 18 years old or older and was written with input from OI experts from North America and…

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RESEARCH

WEBINAR ON FUNDING OPPORTUNITY

December 15th OIFE was represented at a webinar organized by the European Joint Programme on Rare Diseases (EJP RD) together with several OI professionals. The webinar was about their new call focused on “Natural History Studies addressing unmet needs in Rare Diseases”. If you know about researchers who would be interested in collaborating on an…

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MEDICAL

HR-pQCT: A revolution in bone imaging

Interview with Bettina Willie, Professor at McGill University and Shriners Hospital for Children in Montreal, Canada Who are you and what is your relationship to OI? I am Bettina Willie, and grew up in Utah, US. I earned a doctoral degree in Bioengineering from the University of Utah and I did my first postdoctoral training…

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MEDICAL

Bisphosphonates & Pain in OI

Interview with Mercedes Rodriguez Celin, pediatrician at Shriners Hospital for Children, Chicago Who are you & what experience do you have with Pain & OI? I am Mercedes Rodriguez Celin; I am a pediatrician from Argentina with a specialty in Growth and Development. I worked for ten years at the Skeletal Dysplasia Clinic at Garrahan…

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OIFE

OIFE Investigator Meeting

On November 18th OIFE hosted our very first OIFE Investigator Meeting. More than 140 participants from Europe and beyond took part in the online event which included mainly researchers, clinicians, but also some industry representatives, patient representatives and students. The programme both included interesting talks about what is going on in European OI research (basic…

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RESEARCH

TOPaZ trial still recruiting

TOPaZ is a randomised open-label clinical trial for people with osteogenesis imperfecta (OI). The study aims to investigate whether a two-year spell of treatment with a drug called teriparatide (TPTD) followed by treatment with another drug called Zoledronic acid (ZA) reduces the risk of broken bones occurring in people with OI. The TOPaZ trial receives…

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MEDICAL

OI & child abuse – pediatric radiologist perspective

Interview with Professor Amaka Offiah, University of Sheffield and honorary consultant pediatric radiologist at Sheffield Children’s Hospital Who are you and what is your relationship to OI? I work as a professor at the University of Sheffield, employed by the University of Sheffield but I am also an honorary consultant pediatric radiologist at Sheffield Children’s…

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