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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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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EDITORIALS

Pain, Pink Elephants and Peer Support

By Ingunn Westerheim, OIFE President I am going to start this editorial with a quote from the Australian physiotherapist Verity Pacey. You can read an interview with Verity in this OIFE Magazine, which is a special edition about OIFE around the world. “Don’t wait for your healthcare team to ask you about pain and fatigue…

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RESEARCH

Sleep apnea & fatigue in OI

Dreaming of a good night’s sleep and a day without caffeine By Heidi Arponen, OIFE Medical Advisory Board In 2015 we started a project to study fatigue, quality of sleep and its relation to daytime well-being at the University of Helsinki and Helsinki University Hospital. Initial motivation for the study arose from reports of individuals…

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A 3D printed person inside a plastic bag as part of art exhibitEDITORIALS

Tired, fatigued or just lazy… ?

It’s not something I do very often. But every time I move to another apartment, I’m thinking “never again”. It’s close to a returning  nightmare. Needing help with most of the  practical stuff because of my disability, doesn’t make it any better. For every box that needs to  be moved or carried, every lamp that…

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CONFERENCES

OIF CONFERENCE ONLINE

In place of the in-person OIF National Conference this year, the Osteogenesis Imperfecta Foundation in the USA will host a Virtual Conference on July 10-12, 2020. The Virtual OIF Conference will provide live online versions of some of the most popular informational and social sessions at the biennial OIF National Conference. People from all countries…

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