The OIF and OIFE in collaboration are asking adults with OI and parents/caregivers of children with OI to share how OI affects their lives and which aspects of their health and daily lives they would most like OI treatments to improve.

As new OI treatments are developed, we want to make sure those working on them understand what matters most to people with OI and their families, and what meaningful improvement looks like to them.

The survey is open to:

• Adults living with OI, from any country
• Parents or caregivers of a child with OI, from any country

You do not need to be taking an OI medication or have experience with a specific treatment to participate. The survey is available in English only and should take approximately 5 minutes to complete.

Please complete the survey by November 13, 2026.

Complete the Survey

Survey responses are anonymous and will be combined with responses from others to help us understand priorities across the OI community. What we learn may be shared with researchers, clinicians, drug developers, and regulatory organizations to help guide future OI research and treatment development. The OIF may also share a summary of the findings with the OI community.

Thank you for sharing your experience and helping shape future OI research and treatment development.