Osteogenesis Imperfecta (OI) is a genetic bone disorder characterized by fragile bones that break easily. It is also known as “brittle bone disease.”

Core values

- **Improves Quality of Life**: The survey and subsequent publications aim to improve healthcare services and potential future treatments for individuals with Osteogenesis Imperfecta (OI), directly enhancing their quality of life and that of their families and caregivers[1][2][3].
- **Addresses Knowledge Gaps**: The survey fills evidence gaps around the clinical, humanistic, and economic impact of OI, providing valuable data that can inform policy and treatment decisions[1][2].
- **Promotes Positive Change**: The data will be used to support policy work, advocate for multidisciplinary care and adult clinics, and facilitate access to treatments, all of which contribute to positive change in the lives of those affected by OI[2].
- **Contributes to Community Well-being**: The OIF's broader mission includes education, awareness, and mutual support, which foster a sense of community and provide resources to over 100,000 people each year. The re-launch of the Regional Support Group Program and other initiatives like the Jeanie Coleman Impact Grants further enhance community well-being[3][4].