Are you interested in learning about how clinical trials work?
CPAG Webinar: An Introduction to Clinical Trials, 7-23-20 from Rare Diseases Network (RDCRN) on Vimeo.
Are you interested in learning about how clinical trials work?
CPAG Webinar: An Introduction to Clinical Trials, 7-23-20 from Rare Diseases Network (RDCRN) on Vimeo.
OIF Virtual Conference session recordings are now available on the OIF website! Watch the recordings at www.oif.org/virtualconference!
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 https://oif.org/donations/virtualconference/
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 www.facebook.com/groups/oifoundationbookclub.
For more information or questions please contact Christina at cteufert@oif.org or visit www.oif.org/campaign/OIFBookClub.
The OIF Book Club is also for adults! Join the OIF Book Club Adults Reading Program to help support the work of the Osteogenesis Imperfecta Foundation by reading your favorite books and raising money while you do it. Continue reading “Join the OIF Book Club Adults Reading Program!”
CALLING ALL TEACHERS! Whether you’ll be in-person or virtual this fall, consider enrolling your classroom in the OIF Book Club School Reading Program. Continue reading “Calling all teachers! Enroll your classroom in the OIF Book Club Reading Program!”
Thank you to all of our speakers and OI community members for such a wonderful first-ever OIF Virtual Conference!
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
CLICK HERE to read about OIF founder Gemma Geisman, the OIF’s 50th anniversary, Virtual Walk-n-Wheel and Virtual Conference, COVID-19 updates, and new OIF programs and resources!
On June 25th, Dr. Laura Tosi and Dr. Reid Sutton discussed how to prepare and what to expect during a Telehealth Visit. After brief presentations, both doctors participated in a Q&A with the OIF and the audience.
View the recording of this session at https://www.youtube.com/watch?v=5zYAnaOFPUs
The June issue of the OIF E-Newsletter is here! Read about next month’s OIF Virtual Conference, COVID-19 resources, and other OIF updates at https://mailchi.mp/oif/june2020