Thank you to all of the 577 OI community members who took the time to fill out the OI Foundation’s third COVID-19 survey! Our goal in gathering the community’s input is to provide feedback during the changing landscape of COVID-19 and direct the OIF’s resources where most needed. CLICK HERE to view the full survey results and important findings.
To complete future surveys about OI, we highly encourage you to sign up for the OI Registry at www.oif.org/OIregistry to be the first to hear about these opportunities.
The OI Foundation would like to bring your attention to a research study being conducted by Ultragenyx Pharmaceutical Inc:
The Ultragenyx Orbit clinical study is for individuals living with osteogenesis imperfecta (OI). The purpose of this study is to investigate the efficacy and safety of setrusumab in pediatric and young adult patients with OI Types I, III, or IV. Setrusumab is a monoclonal antibody being developed for the treatment of osteogenesis imperfecta (OI). Study participants are at least 5 but not yet 26 years of age, have a confirmed diagnosis of OI Types I, III, or IV, had at least one fracture in the past year or at least two fractures in the past 2 years, and are willing to not receive bisphosphonate therapy during the study. For more information, please click here, or reach out to email@example.com.
If you are interested in learning more about this trial and to see if you can participate you can reach out to firstname.lastname@example.org.
The January issue of the OIF E-Newsletter is here! The January issue of the OIF E-Newsletter is here! Read about OIF National Conference 2022, Bone China Tea, Impact Grants, upcoming events, and more!