STORIES

Athletes without Permission

Our Polish delegate Aneta is planning to write an eBook about good examples from people with OI living in Europe who are physically active in different ways. Aneta herself has OI type IV and has tried many different sports and activities: swimming, scuba diving, crossfit and climbing. The project has the working title “Athletes without…

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STORIES

Jeanette Chedda – fighting for diversity!

Through social media we learned that Jeanette Chedda is running for Parliament in the Netherlands. Her main cause is disability politics and fighting for diversity. The elections are coming up in just a few days.  Can you tell us a little bit about yourself? I am Jeanette Chedda (37), I have OI type three. I…

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STORIES

Artists with OI: Pablo Ostarek

The winner takes it all! What a coincidence! Some time ago OIFE had prepared an interview with Pablo Ostarek, an artist with OI, which you can read below. And this week, we congratulate him for winning the 1st prize in the International Rare Disease Film Festival for his short film “This is not a person”!…

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OIFE

Winners of Black Pearl Award 2021

Ingunn Westerheim and Rebecca Tvedt Skarberg from Norway are the recipients of this year’s Black Pearl Volunteer Awards, an international award that recognizes their volunteer efforts for people with the rare condition osteogenesis imperfecta (OI). How it all started We do the interview on Zoom, since both ladies are at risk for Covid19. But what…

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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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