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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EDUCATIONAL

Animation video about OI – now in English

Animation video explaining OI! Some of you might have seen the animation video that the Swiss OI-organization made to explain OI? From November 12th an edited version with English language and an international twist became available. This in addition to the previous versions in German and French. A big thank you to the Schweizerische Vereinigung…

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ICCBHCONFERENCES

OIFE co-hosts at ICCBH Virtual Forum

The International Children’s Bone Health Conference (ICCBH) is hosting a virtual forum from November 18-20 and we encourage professionals and patient representatives to attend. Target group The meeting programme of ICCBH Virtual Forum is designed for healthcare professionals and researchers.  Pharma industry regulations do not allow open invitations to members of the public to attend. However,…

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A 3D printed person inside a plastic bag as part of art exhibitEDITORIALS

Tired, fatigued or just lazy… ?

It’s not something I do very often. But every time I move to another apartment, I’m thinking “never again”. It’s close to a returning  nightmare. Needing help with most of the  practical stuff because of my disability, doesn’t make it any better. For every box that needs to  be moved or carried, every lamp that…

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Logo OIF 50th anniversaryEDUCATIONAL

OI TeleECHO Clinic Series

The Osteogenesis Imperfecta Foundation in the US recently announced the educational program OI TeleECHO Clinic Series. The goal is to build capacity to safely and effectively diagnose and treat osteogenesis imperfecta (OI). The program is a partnership with Project ECHO™ (Extension for Community Healthcare Outcomes). This series uses Zoom videoconferencing, and will take place on…

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ADVOCACY

OIFE needs patient representatives

Are you interested in research & policy work? As a European umbrella organization, we are more and more often asked to recruit patient representatives for research projects related to OI. This includes both clinical research and basic research. OIFE therefore needs to recruit and educate more people who can represent the voices of people with…

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MEMBERS

IOIF (India) new OIFE Member

OIFE’s ordinary member organizations are European and our main activities are based in Europe. But we collaborate with OI-organizations around the world with the intention to exchange ideas, information and best practices in order to improve lives of people with OI. We have the great pleasure to announce that the Board of OIFE has voted…

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