COVID-19 Survey Results

Thank you to the 199 community members who filled out OIF’s COVID-19 survey to help us better understand how the COVID-19 pandemic is affecting families and individuals living with OI. Your responses will help shape future OIF programs.

Important Findings:

  • A large portion of the OI community has become less active. Health advocates believe that “movement is life.” Therefore, the OIF will provide new opportunities to encourage OI-appropriate exercises and activities.
  • The OIF recommends that community members take the flu and Pneumovax vaccines in order to maintain the best possible pulmonary health. Of note, many pharmacies are offering drive-thru vaccine stations. To view locations where you can receive a flu shot in your area, use the Vaccine Finder at
  • Anxiety and/or depression have been a challenge for many individuals during the COVID-19 pandemic. The OI Foundation has held two community calls on this topic, focusing on resiliency and self-care (available at as well as sharing numerous resources for addressing the pandemic, and will continue to offer similar events in the future.

To view the full COVID-19 Survey results, click here.

The impact of the pandemic is changing daily. We will be sending a second survey out in early 2021, so, if you missed the first survey, please be sure to enroll for the next one! To complete the survey, you must be a member of the OI Registry