EDITORIALS

More than just a survey!

We know you hate surveys. We truly do. Every time you buy an object, order take away, online grocery or come home from a holiday, you get a survey. Are you happy? Unhappy? Do you have something to complain about? Would you like to recommend our app? Do a review? Please, please, please provide us…

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EDITORIALS

Enough is Enough! Speech from Rare2030

This text was originally given as a keynote speech by Rebecca Tvedt Skarberg at the Rare2030 conference in February 2020. It was later published as the editorial in OIFE-Magazine 1-2020.  “It has been a great honour to be a part of Rare2030. Building tomorrow’s roadmap for rare diseases is a project close to my heart, simply…

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A 3D printed person inside a plastic bag as part of art exhibitEDITORIALS

Tired, fatigued or just lazy… ?

It’s not something I do very often. But every time I move to another apartment, I’m thinking “never again”. It’s close to a returning  nightmare. Needing help with most of the  practical stuff because of my disability, doesn’t make it any better. For every box that needs to  be moved or carried, every lamp that…

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EDITORIALS

Safe & active in the OI community!

The last couple of months have been anything but easy. For all of us, this pandemic has arrived as some kind of storm, about which we heard something on the news, but never really thought would have arrived and jeopardized so much our daily, ordinary and chaotic days. I live in Italy, one of those countries where…

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EDITORIALS

It’s a small world…

Fear is the path to the dark side, they said in Star Wars. Because fear can be used as a political tool to convince people to do their social distancing. But fear can also be destructive and cause anxiety. Especially for people who are part of the risk group of Covid-19. How tired we are…

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EDITORIALS

Unbreakable spirits…or?

The last three months has been a special period of time for OIFE and myself. I will never forget the moment when Eero told me that our vice president Ida Männistö (30) was no longer with us, but had passed away suddenly in her home. To me, Ida was both a colleague in the OIFE…

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EDITORIALS

The time is now

For a number of years treatment of OI was mostly limited to bisphosphonates, surgical interventions and physiotherapy. Well basically it still is, if you think of approved and standardized treatment (if such a thing exists in OI). The group of drugs called bisphosphonates actually celebrates its 50th anniversary this year. And for the last 25-30…

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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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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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