From April 22-23 Alessandra Tolaccia represented OIFE at the first Multi-Stakeholder Meeting (MSM) organised by RealiseD dedicated to exploring “Rare and Ultra-Rare Disease Patient Enrolment in Clinical Trials”. The event was designed as a forum to reflect on, validate, and further develop the #RealiseD enrollment model, by bringing together perspectives from across the rare and…
Written by Dimitra Micha, member OIFE Scientific Advisory Board The 26th annual OIF Scientific Meeting in Chicago (April 22-24 2026) welcomes key OI developments from US and Canada scientists and clinicians working on improving health conditions for people with OI. Attendance of more than 100 OI professionals ensures adequate representation of scientific outcomes and clinical…
OIFE supports and encourages the advancement into research to find new treatments, improve diagnosis and aid a better understanding of OI. We strive to keep the OI community informed of what clinical trials are ongoing. As part of this we are hosting our 2nd clinical trial update webinar on October the 22nd, 2024. The goal…
The second part of OIFE’s annual meeting on June 4th 2022 was an educational webinar open to anyone. And a diverse group of ca 80 participants including OIFE-people, clinicians, researchers, industry people and other interested individuals came together to hear about news from the international OI-community. News from OIFE, ERN BOND & others The first…
Who are you and what is your relationship to OI? I am Dagmar Mekking from the Netherlands. I am a mother of a 15 year old daughter with OI. Also I am the director of Foundation Care4BrittleBones. The purpose of the foundation is to improve quality of life for people with OI through research. What…
Research is a strange thing. Some people think research is too slow and too complicated. Others are sceptical and wouldn’t like to be the guinea pig. From the point of a clinician the most important goal in doing research is: Do no harm! Issue Nr. 4-2021 of the OIFE Magazine is dedicated to research and…
On September 4th the Brittle Bone Society had their annual conference online. OIFE was represented by Ingunn Westerheim, who gave a talk together with Dr Laura Tosi and Tracy Hart from the Osteogenesis Imperfecta Foundation on how we can fill the many knowledge gaps we have in OI. The talk tried to explain how people…
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…
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…
