OIFE AGM groupOIFE

25 years of OIFE – how it all began

OI exists all over the world and the success story of the international OI community and the OIFE started on three continents at the same time more or less. But without the wonderful and easy exchange of knowledge and support that we can have today. As we all heard many times this year, everything began…

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STORIES

Artists with OI : Ketut Budiarsa

Who are you and what do you do? My name is I Ketut Budiarsa. I am a Balinese man from Kedewatan, Ubud, Bali, Indonesia. I am the head of Yayasan Cahaya Mutiara Ubud which is a foundation run by people with disabilities, for people with disabilities. I am an accomplished artist and an activist for…

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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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EDITORIALS

Pain & Pleasure

If you think this editorial is going to be an OI-version of “Fifty shades of grey”, I have to disappoint you. It’s going to be about pain & and pleasure in a non-sexual way. And how those two can sometimes affect each other. Let’s start with the positive part. It was my great pleasure to…

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EVENTS

Nigeria new OIFE-member

At the Annual Meeting of OIFE in August 2018, we got a pleasant surprise – a membership application from the Nigerian OI-organization. The Board voted and we were happy to welcome OIF Nigeria as our new associate member, the second one from the African continent. The OI Foundation Nigeria, founded by Tarela Aghanti in March…

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EVENTS

OIFE’s 25th Anniversary

“An Anniversary is a time to celebrate the joys of today, the memories of yesterday and the hopes of tomorrow.” I would say this is pretty much what has happened in Dundee, Scotland from August 16th – 20th 2018 and not only for OIFE. Actually the whole weekend was a celebration of happiness and of…

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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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