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…
In Sweden, the Karolinska Institutet and the Karolinska University Hospital are leading the academic clinical trial BOOSTB4 where we are looking for subjects who have a diagnosis of OI Type III or severe Type IV with a specific collagen mutation. The aim of the clinical trial is to study the safety and efficacy of the…
Our Annual General Meeting (AGM) 2021 took place on Zoom on June 19th. OIFE AGM part 1 (the formal business part) – from 11.00 – 13.00 OIFE AGM part 2 – OIFE projects and collaborations from ca 13.30 – 16.00 CET included: – Prelaunch of the IMPACT survey – News from research (BOOSTB4, TOPAZ, SETRUSUMAB, EURR-BONE…
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…
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…
Each year all delegates are invited to the Annual General Meeting (AGM). Anyone from our member organizations can attend the AGM. In addition OIFE volunteers, volunteers from other organizations, professionals and other people with an interest in OIFE can be invited. At the AGM the EC accounts for OIFE’s activities in the past year, future…
For a number of years treatment of OI was mostly limited to bisphosphonates, surgical interventions and physiotherapy. Well basically it still is, if you think of approved and standardized treatment (if such a thing exists in OI). The group of drugs called bisphosphonates actually celebrates its 50th anniversary this year. And for the last 25-30…
Interview with Cecilia Götherström and Eva Åström Who are you? What is your profession and what is your relationship to OI? Cecilia Götherström: I’m a researcher who have explored the potential use of stem cells for treatment of OI and other diseases for almost 20 years. My “relationship” with OI started in 2002, and since…
Written by Eva Åström, member of OIFE Medical Advisory Board OI symposium in Vellore India The Centre for Stem Cell Research at the Christian Medical Collage in Vellore, India arranged a two day symposium on OI and stem cell treatment on the 6th – 7th of February 2019. The aim was to provide a platform…
