RESEARCH

Inclusion Project for Students with OI

Interview with Jessica Chemtov, Kinesiology student and Galil Osman, Occupational Therapy student; both at McGill University in Montreal, Canada   We both came to learn about OI through our respective disciplines. We are research trainees of Dr. Argerie Tsimicalis who is an Associate Professor at McGill University and a Nurse Scientist at the Shriners Hospitals…

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STORIES

Activist with OI: Giorgia Meneghesso

Who are you and what is your relationship to OI? My name is Giorgia Meneghesso, I have type IV OI, with a little bit of overlapping genes with Ehlers Danlos. I am the regional representative of the Italian OI-association (As.it.OI) in Lombardia, and the third OIFE delegate for the Italian OI-organization As.it.OI. What do you…

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EDITORIALS

Patients, people or partners?

OIFE believes that all clinical trials and research projects affecting OI directly, should have some kind of patient involvement. Patient involvement can happen in different ways and in different phases of a project. Sometimes advice from a new and unexperienced parent or a child is needed. Other times a person with OI, who can represent…

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People demonstratingEDUCATIONAL

What is ableism and why does it matter to you?

Ableism turns disabled people into “others” – and helps non-disabled people stay “normal”. Through the hashtag #AbleismTellsMe different disabled people told their stories about discrimination. What exactly is Ableism? And what is the difference between that and hostility to disabled people? This is what Rebecca Maskos, from Germany, tries to explain in this article. It…

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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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