My name is Farisha, and I’m a trainee genetic counsellor at Cardiff University. As part of my training, I’m preparing a presentation about osteogenesis imperfecta (OI) and hope to learn more about the experiences of family members of people with OI, including the challenges they face, what matters most to them, and where support could be improved.
Hearing about your experiences will help me and my peers better understand how health services and support can best meet the needs of people with OI and their families, both now and in the future.
I’d also like to give something back to the OI community by making a donation to a charity or organisation that supports people with OI. You’ll have the opportunity to recommend an organisation at the end of the survey, and I’ll donate to the one mentioned most frequently by respondents.
The survey is anonymous, and you can skip any questions you don’t wish to answer. Please avoid including names or other identifying information. The survey should take no more than 10 minutes to complete.
If you have any questions or would like to get in touch, you’re very welcome to email me at colbournef@cardiff.ac.uk.
Thank you so much for taking the time to share your experiences and contribute to a better understanding of the needs of families affected by OI.