URGENT RECALL INFORMATION: Supplemental oxygen or a positive pressure breathing device such as CPAP or BiPAP may be prescribed to help manage breathing problems in individuals with osteogenesis imperfecta. On June 14, 2021, the company Philips released a recall notification update. The recall notification update is related to some of their mechanical ventilator devices, Philips Bi-Level Positive Airway Pressure (Bi-Level PAP) and Continuous Positive Airway Pressure (CPAP).   

We strongly encourage you to visit the following link to learn more about possible health risk, replacement and repair, recall notification advice and additional pertinent information related to this recall: June 14th, 2021 Recall Notification Update . The OI Foundation is committed to keeping OI community members informed and as any further notifications become available, we will provide updates.   

For questions regarding the recall, please visit the Additional Information section at the following link: June 14th, 2021 Recall Notification Update. While the OI Foundation is NOT affiliated with the Philips Company, we are committed to providing up-to date information for our OI-Community members.  

Research Update Session: Women’s Health and Pregnancy

Join the OIF for a Research Update on Women’s Health and Pregnancy

Join the OIF for a conversation with Dr. Deborah Krakow, OIF Medical Advisory Council (MAC) member and Professor and Chair of Obstetrics and Gynecology at UCLA, and Tracy Hart, OIF CEO, to discuss current research in women’s health and pregnancy.  This session will be the second in a series meant to demystify and contextualize medical research from the Brittle Bone Disorders Consortium (BBDC).

The Brittle Bone Disorders Consortium (BBDC) is a multicenter initiative that focuses on understanding and providing better treatment options for osteogenesis imperfecta. The first BBDC update with Dr. Brendan Lee and Cameron Penn can be viewed here.

As a partner of the OIF, the BBDC has 3 major goals:

  1. Gain a better understanding of all genetic forms of OI
  2. Expand treatment options for those with OI
  3. Help guide the next generation of physicians and scientists.

This series is intended for anyone who wants to learn more about OI medical research, and we encourage everyone to attend!


Happy #pridemonth!

This #pridemonth and all others, the OIF supports all members of the OI and LGBTQ+ community. The OIF strives to be an inclusive organization for all. To learn more about these long-term efforts, please join us for a special session at the OIF National Conference with diversity, equity, and inclusion consultant Chaz Kellem. To register to attend this session, please visit https://us02web.zoom.us/meeting/register/tZMsduGhqD4tEt0E5OwWJb6gclyk4rJXlnbN

OIF Virtual Conference Schedule

Check out the Virtual Conference program below and click the registration links for each session you would like to attend!


Unbreakable Spirit® Trivia


10:30-11:45am ET
Navigating a New Diagnosis
Sponsored by Ultragenyx Pharmaceutical

12:15-1:45pm ET
Welcome/ Research Update

2:00-4:00pm ET
Pediatric Health Panel 
Sponsored by Shriner’s Canada

2:00-4:00pm ET
Kids Room

2:00-4:00pm ET
Adult Health Panel 
sponsored by Kennedy Krieger Institute

4:30-5:30pm ET
Parents Meet and Greet

7:30-9:30pm ET
Adults Social Hour


10:30-12:30pm ET
Ask the Expert

Fitness and OI

1:00-2:00pm ET
Mild OI Forum 
Sponsored by Ultragenyx Pharmaceutical

2:15-3:15pm ET
Dental Session

3:30-5:30pm ET
Youth Forum Focus Group

3:30-5:30pm ET
Women’s Health Session

5:45-6:30pm ET
Closing Session