CPAG Webinar: An Introduction to Clinical Trials. 

Are you interested in learning about how clinical trials work?

Watch the Coalition of Patient Advocacy Groups (CPAG) Webinar: An Introduction to Clinical Trials.
Tracy Hart, OIF CEO serves as the chair of the Coalition of Patient Advocacy Groups Steering Committee (CPAG). CPAG is the collective representation of patient groups affiliated with the consortia of the Rare Diseases Clinical Research Network (RDCRN), a National Institutes of Health (NIH)-funded research network. CPAG members influence the direction of the Rare Diseases Clinical Research Network as a whole.

CPAG Webinar: An Introduction to Clinical Trials, 7-23-20 from Rare Diseases Network (RDCRN) on Vimeo.

Virtual Conference Recordings Now Available

OIF Virtual Conference session recordings are now available on the OIF website! Watch the recordings at!

We are pleased to be able to offer OIF resources, like the OIF Virtual Conference, free of charge to ensure that anyone that wants to participate, can. If you are able to, we hope that you will donate to support the work of the OI Foundation, which includes providing important programs like this one. Make a gift at

Join the OIF Book Club Reading Group!

Connect with other adult OIF Book Clubbers by joining the OIF Book Club Reading Group on Facebook! Use this space to share what you’re reading, how you’re fundraising, book recommendations, or even find friends to start a virtual book club with.

To join, visit

For more information or questions please contact Christina at or visit

Virtual Conference 2020

Thank you to all of our speakers and OI community members for such a wonderful first-ever OIF Virtual Conference! 

OIF Virtual Conference Session Recordings:

To view closed captioning, press CC at the bottom of the video.


Welcome Session and Research Update
The opening session welcomes community members and speakers to the 2020 OIF Virtual conference. OIF Medical Advisory Council member and Brittle Bone Disorders Consortium Principal Investigator Dr. Brendan Lee will present an OI research update.

Speakers: Francis Glorieux, OC, MD, PhD; Tracy Hart, CEO; Brendan Lee, MD, PhD; Cameron Penn; Laura Tosi, MD; Maegen Wallace, MD

Basics of OI/Genetics

This session is an introduction to osteogenesis imperfecta for individuals and families with a new diagnosis, and for those who want a refresher on the basic facts about OI, including information on genetics.

Speakers: Joan Marini, MD, PhD

Pediatric Panel
Sponsored by Children’s Hospital & Medical Center (Omaha, NE)

Pediatric physician panel members present an overview of general medical issues including: navigating surgery, bone, muscle and joint health, the role of pharmacologic treatments, and more.

Speakers: Suken A. Shah, MD; Maegen Wallace, MD; Beth Jacks, MS, PT; Reid Sutton, MD; Hollis Chaney, MD

Adult Panel; Managing Adult Health Issues
Physician panel members who have clinical experience treating adults living with OI present an overview of general medical issues.

Speakers: Kara Ayers, PhD; Sandesh C.S. Nagamani, MD; Mahim Jain, MD, PhD; Deborah Krakow, MD; Cathleen Raggio, MD; Sandy Sandhaus, MD, PhD

Pain and Fatigue
Physician speakers present information and strategies for managing chronic and acute pain and fatigue.

Speakers: Mark Popenhagen PsyD, ABPP; Mahim Jain, MD, PhD; Jessica K. Goeller, DO; Christopher Joseph, MSPT; Daniel Raphael Aaron Sova, MD

Mild Forum
This forum discusses topics specific to mild OI including: maximizing bone strength and functional joint health, pulmonary health, hearing loss, and daily living with mild OI.

Speakers: Emily L. Germain-Lee, MD; Peter Smith, MD; Reid Sutton, MD; David M. Vernick, MD, FACS; Eric S. Orwoll, MD

Surgical Panel
Sponsored by Pega Medical

This session is designed to provide information about navigating surgery with OI. Physician speakers present information on topics such as rodding surgery and pre- and post op considerations.

Speakers: Richard W. Kruse, DO, MBA; Paul Esposito, MD; Jeanne Franzone, MD; Peter Smith, MD; Laura Tosi, MD;  Maegen Wallace, MD

Dental Session
This session provides information about a range of dental issues in individuals with OI. Speakers cover dental management and treatment considerations for children and adults with all types of OI.

Speakers: Jean-Marc Retrouvey, DMD, MSc, FRCD; Kevin Ricker, DDS, MS; Joseph A. Napoli, MD, DDS


Virtual OIF Walk-n-Wheel – Register for the LIVE Zoom Call!

Don’t forget to register for the live Zoom call!
Join the OIF staff, Walk-n-Wheel Co-chairs (Mark Birdwhistell, Stephanie Greenwood, and Dr. Maegen Wallace), and OI community members live on Zoom from 7:00-8:00pm ET to participate in the Virtual OIF Walk-n-Wheel! Walk around your neighborhood or living room to raise OI awareness and support the mission of the OI Foundation.
TAG US! Tag us on social media with #OIFwalknwheel to show us where you are walking and wheeling!