[Image shows a gouache/ink/pencil cartoon illustration I made in my sketchbook. Against a black background, a yellow orb frames an illustration of me sitting on the floor, crooked white femme with glasses and hair in a messy bun. I look down lovingly at the ghost of kid-me sitting in my lap, and hold the back of her head gently. She looks back at me and holds juniper (fluffy black cat) in her lap. Around the orb is abstract decorative designs of yellow vines, sparkles, and dots.]STORIES

10 tips to parents of children with OI

Unsolicited advice for non-disabled parents of disabled children By Haley Brown, artist from the US Unsolicited parenting advice from someone who isn’t even a parent is…everyone’s favourite thing, right? I know, I know, it can be really rude and annoying. But I wrote this from a place of deep love – for disabled kids AND…

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STORIES

Parenting a child when you have OI

Claudia Finis is a member of the German OI-association DOIG and a volunteer for the OIFE. With the input from two other parents (Janina and Sven) who have OI themselves, she wrote an article about parenting a child when you have OI. The article was first published in the German magazine “Durchbruch” (Breakthrough). It has…

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STORIES

Artists with OI: Erwin Aljukic

Erwin Aljukic is an actor, dancer, speaker and fashion journalist. Since 1998 he can be seen on TV, in the cinema and at the theater. In addition to acting, he studied fashion journalism and has been working as a freelancer ever since. In 2014 he devoted himself to contemporary dance. Aljukic has been a permanent…

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STORIES

Life as a “Shadow Child”

Often siblings of children with a chronic illness are called “shadow children” because they live in the blind spot of their parents. They are often alone with their grief and put their own needs aside for their siblings’ needs. My name is Kristine Holm Laursen, but just call me Krisser. I am now 26 years…

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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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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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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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