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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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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EDITORIALS

The Voice of People with OI

February’s OIFE Magazine main topic is research and I could have called this editorial “The patients’ voice”. But to be honest, I’m not too fond of the term patients. Patients belong in hospitals. The OIFE represents people with OI and families, who most of the time live active and meaningful lives outside hospital walls. There…

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EDITORIALS

Dare to…

There is perhaps no consistent theme in the January edition of the OIFE Magazine. But maybe I just haven’t looked close enough? After thinking about it one more time, it occurred to me that maybe the theme of this newsletter is to dare? The Portuguese project you can read about in this edition was called…

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