MEDICAL

The IMPACT Survey

The IMPACT Survey is a joint initiative between OIFE, OIF & Mereo BioPharma. The survey will be launched in summer 2021 and we will need the help of all our member organizations and the OI-community to spread the word and encourage as many people with OI (and parents) to fill in the survey.  Written by…

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MEDICAL

COVID-19 survey for people with OI

As a follow-up to the survey in July 2020, the OI Foundation has created a second survey focused on how the COVID-19 pandemic continues to impact the OI community in the US and worldwide. The OIFE is supporting the project.  Help us know more! Please take a few minutes to complete this new survey today!…

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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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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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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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Collage clinical imagesRESEARCH

Investigating Denosumab in children with OI

Clinical trial: Investigating Denosumab in children with OI Interview with Dr. Jörg Oliver Semler, Paediatrician, OIFE Medical Advisory Board (MAB) How did the project of investigating denosumab in children start? Regarding the use of denosumab in OI there are a few projects which have to be separated. At the beginning there were a few case…

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Do not pass sign with broken boneRESEARCH

The TOPaZ trial

Treatment of OI with Parathyroid hormone and Zoledronic acid Interview with Prof. Stuart H. Ralston, University of Edinburgh, Western General Hospital, UK Who are you & what is your relationship to OI? I am a physician and rheumatologist with a special interest in the treatment of bone diseases. I have been taking care of patients…

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