[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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RESEARCH

SISOM OI ASSESSMENT & COMMUNICATION TOOL

The research team at Shriners Hospitals for Children Canada just published “Experiences of Children With Osteogenesis Imperfecta in the Co-design of the Interactive Assessment and Communication Tool Sisom OI: Secondary Analysis of Qualitative Design Sessions” in the JMIR Pediatrics and Parenting. The people behind the article were Maia Siedlikowski, Lianna Curiale, Dr. Frank Rauch and…

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Training with ballMEDICAL

Russia: Mobile Rehab Project

Read our interview with Nadezhda Epishina, M.D. and physical therapist Charitable Fund „Fragile people“ (Russian OI-organization) from Moscow, Russia. The interview was first published in OIFE Magazine 2-2021. Who are you and what is your relationship to OI? My name is Nadezhda Epishina. I am a doctor and a physical therapist. I have been engaged…

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YOUTH

Welcome to Osteonopolis!

In Spring 2021 the Russian camp for OI-families organized by Fragile Children was under the motto “Osteonopolis”. The camp participants landed in ancient Greece. They were divided into groups with different political parties and tried their best in creating social programs. Then political candidates would present their programs in the elections and the winner would…

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ADVOCACY

Guide for parents after diagnosis

Your newborn child is finally here, but when you discover that all is not as it should be, what do you do? – When your child is diagnosed with a rare condition, there are so many things that go through your head. OIFE recommends the publication “Guide for parents after diagnosis”  to parents after they…

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