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…
Some people felt that the project Key4OI were missing some important aspects of adult health in OI, when the first set of outcome measures in OI was developed. Now the project wants to develop an additional, supplementary set of outcome measures for 4 new areas. Ears, teeth, lungs and heart Key4OI wants to develop…
Check out the new OI-song «Count on Me» performed by 21 singers from the OI-community in 10 different countries! The project was initiated by supporting member of OIFE Care4BrittleBones. Well done!
Friday the 19th the Medical Advisory Board (MAB) of OIFE came together for their 2nd meeting in 2020. The topics included Key4OI and the new rare bone registry EuRR-Bone. In addition to the OIFE MAB, we had invited the OIFE EC, our resource group on registries and Tracy Hart from the OI Foundation. In total…
Make sure you mark the date November 22nd – 25th 2019, when the international conference QualityofLife4OI will take place in Amsterdam. The conference is an initative from Care4Brittle Bones and is hosted by a coalition of OI-organizations (Care4BB, OIFE and OIF), Medical professionals (ERN – BOND) and the Industry. It is coordinated by Foundation Care4BrittleBones.…
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…
