Portrait KristianSTORIES

Artist with OI: Kristian Keogh

Kristian is an Australian professional video editor and graphic designer. He is using a wheelchair, but this didn’t stop him from making a dream come true: performing with the Bangalow Theatre Company doing the Musical “RENT”, his favorite musical. Kristian also talks for instance about daily challenges and the situation of people with a disability…

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Sofie and familyMEDICAL

Wrongly accused of child abuse

Interview with Sofie Hellström, mother of Gabriel, affected by a milder form of OI type 4 Who are you and what is your relationship to OI? My name is Sofie Hellström, I am 31 years old and I was introduced to OI in the summer 2020 when my son was diagnosed with a milder form…

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MEMBERS

Ukraine – Before and After

Three times our life was divided into “Before” and “After”… Written by Lyubov Petrova, mother of a daughter with OI & chair of the Ukranian OI-organization.  The Diagnosis First it was my daughter’s diagnosis with Osteogenesis Imperfecta (OI)… “Before” was joy of the birth of a long-awaited beautiful baby-daughter, registration to the best kindergarden in…

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STORIES

Activist with OI: Umi Asaka

Umi, who is originally from Japan, moved to New Zealand after the nuclear disaster in Fukushima back in 2011. Today, she is living in an accessible house on South Island together with three friends. Umi talks about her life and what it means to live in New Zealand as an immigrant with a disability. My…

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MEMBERS

New MDT OI-Clinic in Ghana

In January 2022 a new multidisciplinary (MDT) clinic for osteogenesis imperfecta was established in Ghana. We did an interview with the initiator and woman behind it – Mrs. Justina Yiadom-Boakye, the president and Founder of OIFE’s associate Member Ghana (OIF Ghana). Who are you and what is your relationship with OI? I am Mrs Justina…

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Sammi hold a ribbon saying Esperanza"STORIES

Artists with OI: Sammi Haney

Interview with Sammi’s Father Matt Haney Sammi loves weird silly toys and takes whatever her current favorite is with her everywhere. She has OI Type III and uses a wheelchair. She has broken hundreds of bones from simple things like turning too much when asleep or sneezing too hard. At the age of 11 she…

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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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Woman practising yoga on a beachMEMBERS

Yoga & OI

“Yoga is a light, which once lit will never dim. The better your practice, the brighter the flame.” B.K.S. Iyengar (Yoga Guru)   What exactly does yoga mean? Can anyone with OI practice yoga, no matter how limited their movement is? And how can yoga help in everyday life? Archana, the President of OIFE’s member…

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