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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EDITORIALS

About youth and hashtags

“I would so much like young people to have a sense of the gift that they are.” – John Denver. It took me a good while to find the perfect quote to start this editorial, because for some reason most quotes about youth I found were either bitter or condescending. Instead, I wanted to highlight…

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Q for qualityRESEARCH

Survey on respiratory function & OI

The OIFE would like to bring your attention to a research study investigating cardiopulmonary outcomes and quality of life in adults with OI. The clinical examination part is only recruiting people from the USA. But the internet based questionnaire/survey is open for any person with OI 18 years of age or older as long as…

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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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