On the occasion of the 13th International Conference on Osteogenesis imperfecta in August 2017 an expert panel was convened to develop an international consensus paper regarding physical rehabilitation in children and adolescents with Osteogenesis imperfecta. The paper has now been published. The project was initiated by OIFE’s supporting member Care4BrittleBones, but OIFE assisted with spreading…
The Spanish research foundation Fundación Ahuce has launched a new research project in collaboration with the University of Valencia. The OIFE encourages as many people with OI as possible to take part – even if chronic pain is an issue for you or not. People from all countries can participate as long as they can…
The OIFE Youth event will take place between the 24.-28. October 2018 in Aarhus, Denmark. Registration for the 2018 event closed on June 15th. We have participants from 11 different countries who have registered. The goals of the OIFE Youth Event sharing experience & ideas across borders networking and getting to know young people with…
In that moment when you hear the bone break, it affects all of us. In a fraction of a second unpleasant emotions arrives. We have been here before. We will definitely be here again. We have become experts in a life with a disability. My disability. Each of us have our own ways to handle…
By Rageema Livingstone, chair of Brittle Bones South Africa Who are you and what is your relationship to OI? My relationship with OI started nearly 12 years ago when my daughter was born with the condition. She is diagnosed as type 3 and currently wheelchair bound as she is experiencing bone thinning to the extent…
Who are you and what do you do? My name is Mira Thompson and I’m a singer. In what way has OI affected your art? As much as I want to say it hasn’t, I also know it completely affects the way I look at life in general. Which does not mean every song I…
Inger-Margrethe and Ingunn were so lucky to be able to represent NFOI and OIFE in beautiful Vienna, Austria where they were joined by Rebecca Tvedt Skarberg (OIFE/ERN BOND) and Dace Liepina (OI Latvia – LOIB). André Wittwer and Knut Erik T. Skarberg were also there to keep the ladies company. This is the report from…
What is quality of life? I guess there are almost as many answers to that question as there are people on the planet. During one of the sessions at the ECRD conference, we were asked to use an app to create a wordcloud of what really mattered regarding quality of life. The words that got…
The 37th Annual Meeting of the European Pediatric Orthopedic Society (EPOS) took place in Oslo in April. The conference annually gather more than 500 pediatric orthopedic surgeons, many of them working with OI. Since we knew both the international chair (dr. Darko Anticevic) and the national chair (dr. Terje Terjesen), we took the liberty of…
