Increasingly people with OI and health care providers realise that living with OI can have an impact well beyond physical. While everyone knows someone with OI who has struggled severely in a certain phase of his/her life, it often is not seen as an area that needs support.
This is why, Care4BrittleBones has funded a 2-year project looking into psychosocial consequences of OI in collaboration with the VOI (Dutch OI Association), the UMC Utrecht (expertise center for children with OI) and the Isala (Expertise Center for adults with OI) in the Netherlands. A preview of their research (in Dutch) can be seen here. It will be translated into English and freely shared during the conference Quality of Life 4 OI in Amsterdam this November.