OIFE

IMPACT SURVEY – First article published

An article called “The patient clinical journey and socioeconomic impact of osteogenesis imperfecta: a systematic scoping review” was published recently in Orphanet Journal of Rare Diseases. The purpose of this review was to capture and quantify the published evidence relating specifically to the clinical, humanistic, and economic impact of OI on individuals, their families, and…

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MEDICAL

Functional performance in everyday activities

Interview with Verity Pacey, Physiotherapist & researcher, Sydney, Australia My name is Verity Pacey and I’m a physiotherapist from Sydney, Australia. I began working with children with OI around 20 years ago now. I had the privilege to work in a specialist multidisciplinary clinic for children with OI – the only one in Australia at…

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eurrbone logoADVOCACY

EURR-BONE Final Meeting

On February 13th we were four representatives from OIFE who attended the final meeting of the EuRR-Bone registry as a 3 year old project. Claudia Finis attended face to face and Taco van Welzenis, Rebecca Tvedt Skarberg and Ingunn Westerheim attended online. The project team in Leiden have delivered on all their milestones, and has…

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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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