CONFERENCES

OIFE at Mereo

On January 22nd 2019 OIFE was invited to the pharmaceutical company Mereo Biopharma in London to talk about OI from the perspective of people who have OI themselves. OIFE was represented by Honorary Member Taco van Welzenis, who also talked about how the OI-community is organized and what is important for us in research and…

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MEDICAL

Transition – OI care from childhood to adulthood

What is the Transfer Tool? The OI transfer tool is a portable, clinically meaningful, person-focused tool designed to help improve the transition experience for adolescents and young adults living with OI. Once completed, the tool summarizes the adolescents’ time spent receiving OI care in the paediatric setting, and is intended to be given to their…

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RESEARCH

Research Interview – “Pain and OI”

Interview with Rubén Muñoz Cortés, psychologist of Fundación AHUCE Who are you? I am Rubén Muñoz Cortés. I live in Valencia, Spain. I am a psychologist with a Master’s Degree in Clinical Psychology and Neuropsychology. I am a PhD candidate in Clinical and Health Psychology at the University of Valencia. Throughout my career, I have…

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CONFERENCES

Flashbacks from Baltimore

The 2018 OIF National Conference, themed EXPLORE, gathered over 650 attendees and 50 speakers for a busy and memorable weekend in Baltimore, Maryland! The attendees of this summer’s conference represented seven countries and nearly forty US states. And on behalf of the OIFE I thank the OIF for the kind invitation to take part in…

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MEDICAL

Where to find information on OI?

There is a lot of information about osteogenesis imperfecta on the Internet. But how do you know where to find information that is good and up to date in your country or language? We recommend searching the OI-organizations for advice. Information in English can be found here: OIFE’s information about OI OIF’s Information Center BBS…

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MEDICAL

Consensus paper physiotherapy

On the occasion of the 13th International Conference on Osteogenesis imperfecta in August 2017 an expert panel was convened to develop an international consensus paper regarding physical rehabilitation in children and adolescents with Osteogenesis imperfecta. The paper has now been published. The project was initiated by OIFE’s supporting member Care4BrittleBones, but OIFE assisted with spreading…

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MarieYOUTH

It affects all of us

In that moment when you hear the bone break, it affects all of us. In a fraction of a second unpleasant emotions arrives. We have been here before. We will definitely be here again. We have become experts in a life with a disability. My disability. Each of us have our own ways to handle…

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