Logo rare disease day2021STORIES

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. Jon-Kristian lives in Bergen, Norway. He loves doing e-sport and playing board games with his family. Once a week he makes dinner for the family, together with…

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Jenni in fancy vehicle in snowSTORIES

Artists with OI: Jenni-Juulia from Finland

Interview with Jenni-Juulia Wallinheimo-Heimonen Who are you and what do you do and in what way has OI affected your art? I’m a multidisciplinary artist and an activist making political disability arts. My passions are structural violence, aesthetics of assistive devices and issues related to women with disabilities. My background is in textile arts but…

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Small blonde woman with OI sitting in a TV-studio explaining something.STORIES

Work & OI

Interview with Anni Kyröläinen, Finland Who are you and what is your relationship to OI? I am Anni Kyröläinen. I am 31 years old and I come from Finland. I was born in Eastern Finland and after high school I moved to Helsinki from my little little hometown. I studied political science in the university…

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Photo of small person with blonde hair and red t-shirt.STORIES

E-soccer: Niklas lives his dream

Interview with Nicklas Luginsland – Esoccer player with OI  Can you tell a little about yourself? My name ist Niklas Luginsland, 24 years old. Currently I live at home in Germany with my parents and my brother. One year ago I finished my Bachelor in Public Management. During my studies I lived together with 3…

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STORIES

Wheelchair Curling with OI

Interview with Michal Daszkowski – curling player with OI  Can you tell a little about yourself? I’m 47 years old and live in Warsaw, Poland. At the moment I’m living alone in my pretty accessible flat. I am using a wheelchair for almost my every daily activity. I am working as a freelancer (IT-system and…

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STORIES

Artists with OI: Chiara Bersani

Who are you and what do you do? My name is Chiara and I am a writer/creator and a performer with a disability. I am Italian and I am 35 years old. I work in different fields like performing arts, contemporary theatre and contemporary dance. In what way has OI affected your art? Honestly, I…

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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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