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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Chronic pain in OIMEDICAL

Survey about pain & OI

The Spanish research foundation Fundación Ahuce has launched a new research project in collaboration with the University of Valencia. The OIFE encourages as many people with OI as possible to take part – even if chronic pain is an issue for you or not. People from all countries can participate as long as they can…

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EVENTS

OIFE Youth Event 2018

The OIFE Youth event will take place between the 24.-28. October 2018 in Aarhus, Denmark. Registration for the 2018 event closed on June 15th. We have participants from 11 different countries who have registered. The goals of the OIFE Youth Event sharing experience & ideas across borders networking and getting to know young people with…

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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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Girl with woman in south africaMEMBERS

New OIFE member: Brittle Bones South Africa

By Rageema Livingstone, chair of Brittle Bones South Africa  Who are you and what is your relationship to OI? My relationship with OI started nearly 12 years ago when my daughter was born with the condition. She is diagnosed as type 3 and currently wheelchair bound as she is experiencing bone thinning to the extent…

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Mira Thompson singingSTORIES

Artists with OI: Mira Thompson

Who are you and what do you do? My name is Mira Thompson and I’m a singer. In what way has OI affected your art?
 As much as I want to say it hasn’t, I also know it completely affects the way I look at life in general. Which does not mean every song I…

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ECRD conference groupCONFERENCES

Vienna 2018 – EURORDIS, RDI & ECRD

Inger-Margrethe and Ingunn were so lucky to be able to represent NFOI and OIFE  in beautiful Vienna, Austria where they were joined by Rebecca Tvedt Skarberg (OIFE/ERN BOND) and Dace Liepina (OI Latvia – LOIB). André Wittwer and Knut Erik T. Skarberg were also there to keep the ladies company.  This is the report from…

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Q for qualityEDITORIALS

Q for Quality

What is quality of life? I guess there are almost as many answers to that question as there are people on the planet. During one of the sessions at the ECRD conference, we were asked to use an app to create a wordcloud of what really mattered regarding quality of life. The words that got…

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Epos conferenceCONFERENCES

OIFE at EPOS conference

The 37th Annual Meeting of the European Pediatric Orthopedic Society (EPOS) took place in Oslo in April. The conference annually gather more than 500 pediatric orthopedic surgeons, many of them working with OI. Since we knew both the international chair (dr. Darko Anticevic) and the national chair (dr. Terje Terjesen), we took the liberty of…

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