Recent research in several countries has brought to the surface that OI can have psychosocial impact on various fronts. Examples of this would be feeling anxious, isolated or depressed. Not everyone with OI experiences them, but it is probably fair to say that most people with OI are dealing with psychosocial issues at some point in time in their life. The good news is: Various established ways of dealing effectively with psychosocial challenges exist which can also serve people with OI well!
In 2019 we would like to build up a network to foster knowledge exchange around psychosocial aspects. The network will be led by Dr. Kara Ayers (Cincinnati children’s hospital, USA) and Dr. Claire Hill(Sheffield’s children hospital, UK). The purpose of the network is to explore key topics of shared interest, foster scientific research and best practice exchange in this area with the overall aim to improve quality of life for people with OI.
If you are a professional working with people with OI (children or adults) in relation to psychosocial topics and interested to share your experience and learn from others, please sign up to the community to be kept informed about their upcoming meetings and any educational activities. This professional network is open to people from all disciplines including allied health professionals.
Sign up HERE, so we can contact you when we get started with our onboarding survey! If any questions, please feel free to connect to email@example.com