STORIES

Artists with OI: Ditte Johansen

Can you tell us a little about yourself? My name is Ditte, and I’m a 25-year-old woman, that is born – and still living – in Denmark. I’m working as a writer, and besides my ordinary and boring adult life, I’m filling my days with lots and lots of hobbies; I’m an actor, an author…

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STORIES

The art of being unhappy

Can we be unhappy or do we keep on with that unbreakable spirit which people with OI all seem to have? Why do we want to be so happy? Think about this with me for a while! Imagine: you were a 2 year old toddler and your mother or father asks you to draw something…

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STORIES

How Apple Watch helps me stay healthy

“Jacob Wittorff has called the alarm center after Apple Watch detected a bad fall.” That message lands late at night on May day 2019 on my parents ‘and brothers’ phones. Shortly before, I was pushed home in my wheelchair from the football cup final at the stadium. However, the evening comes to an abrupt end.…

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STORIES

Artists with OI: Matt Shilcock

Who are you and what do you do? My name is Matt Shilcock, I am a contemporary dancer and performing artist from Adelaide, South Australia. I have been creating and performing dance theatre works in festivals and locations around the world over the last 10 years. I predominately perform Contemporary Dance, but living with OI,…

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Meet Jon-Kristian from Norway

In 2021 Jon-Kristian (12) will be one of the faces of Rare Disease Day – an annual international awareness day celebrated on the last day of February. Get to know all the faces of #RareDiseaseDay 2021 on this webpage. Jon-Kristian lives in Bergen, Norway. He loves doing e-sport and playing board games with his family.…

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STORIES

Rick Brink – Minister with OI

Since 2019, the Netherlands has an unofficial Minister of Disability Affairs. Rick Brink who has OI and is using an electric wheelchair, won this appointment during the broadcast of the television programme ‘De minister van Gehandicaptenzaken’ (The Minister of Disability Affairs). Brink was elected by a jury, including former cyclist Leontien van Moorsel, cabaret artist…

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STORIES

Artists with OI: Veronica Tulli

Interview and translation: Anna Rossi Can you introduce yourself? My name is Veronica Tulli and my stage name is LuluRimmel. I live in Rome, Italy. I am a singer, songwriter and performer. And I am quite confident in saying this. But I do not hide that at least in Italy, this is quite a bold…

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STORIES

This is not a person

Mr. Pablo Ostarek from Spain has OI himself and is a film maker by profession. Now he has a new project, with the topic of overprotection, something many people with OI can relate to. We have asked him to tell us a little bit about his project and his intentions behind the film Esto no…

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