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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Logo of IOIF IndiaMEMBERS

New OIFE Member India (IOIF)

Meet our new member – the Indian Osteogenesis Imperfecta Foundation (IOIF) Interview with Archana Ravindra, President IOIF As the president of the Indian Osteogenesis Imperfecta Foundation (IOIF), I am honoured to meet  you all. I am Archana Ravindra from Bangalore, India. I was born with OI and was formally diagnosed at the age of 4…

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OI written 18 times in different colors.RESEARCH

New OI-causing gene (KDELR2) detected

By Dr. Oliver Semler, Paediatrician, OIFE Medical Advisory Board (MAB) A new OI-gene has been detected by a European group of researchers from Germany, UK, The Netherlands and Spain. The new type of OI is inherited in a recessive way. In most individuals with Osteogenesis imperfecta, the disease is inherited in a dominant way and…

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RESEARCH

BOOST2B – stem cell trial in India

Dr. Madhuri’s team starts stem cell therapy in children in India We are pleased to inform you that we have initiated the stem cell therapy for children with Osteogenesis imperfecta under the Indo – Swedish collaboration, funded by DBT, India and VINNOVA, Sweden at Christian Medical College, Vellore. We have treated a patient severely affected…

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Screenshot from workshop on patient involvementCONFERENCES

Successful workshop on patient involvement

On Tuesday 18th of November Ingunn Westerheim (OIFE) & Tracy Hart (OIF) together hosted a workshop about patient involvement in research at the ICCBH Virtual Forum. The workshop had more than 50 participants from Europe, US, Canada and beyond. It included three talks about patient involvement from different perspectives as well as a constructive Q&A…

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Tellef laughing at a beachRESEARCH

BOOSTB4 – stem cell therapy in OI

Interview with Anne Siqveland and Nicolai Wendt (parents of Tellef, 1 year old) Who are you and what is your relationship to OI? We are a Norwegian family of four, Anne (36), Nicolai (34), Edvard (4) and Tellef (1). Tellef was prenatally diagnosed with OI and his multiple fractures and mutation of COL1A2 gene place…

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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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RESEARCH

Sleep apnea & fatigue in OI

Dreaming of a good night’s sleep and a day without caffeine By Heidi Arponen, OIFE Medical Advisory Board In 2015 we started a project to study fatigue, quality of sleep and its relation to daytime well-being at the University of Helsinki and Helsinki University Hospital. Initial motivation for the study arose from reports of individuals…

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Logo of heart study PortugalRESEARCH

OI & the Heart

Interview with Céu Barreiros, Cardiopneumologist About the heart As most of you will probably know, OI being a connective tissue (collagen) disorder, other parts of the body than bone can be affected. Collagen type 1 is present in different parts of the cardiovascular system, including what we call the fibrous skeleton of the  heart, its…

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