Thank you for attending the 2021 Virtual OIF National Conference!

OIF Conference Session Recordings are Now Available! To watch sessions from the Virtual OIF National Conference, please visit the OIF’s YouTube Channel!


 

CONFERENCE PROGRAM

  • 10:30am - 11:45am ET

    Navigating a New OI Diagnosis* (Sponsored by Ultragenyx Pharmaceutical)

    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.

    ** Closed Captioning will be provided for this session
    ** Sesión disponible con traducción al Español
    ** Séance disponible avec traduction Française


  • 11:30am - 12:00pm ET

    Virtual Lobby

    Gather together with your fellow conference attendees in a free format meeting room where you can say hello to old friends or meet new ones.


  • 12:15pm - 1:45pm ET

    Welcome & Research Update*

    Join OI Foundation CEO, Tracy Hart along with OIF Board President, Cameron Penn as they welcome attendees to the OIF Virtual Conference! Guests will hear exciting research updates from Dr. Brendan Lee, Dr. Robert Sandhaus, and Dr. Laura Tosi.

    ** Closed Captioning will be provided for this session
    ** Sesión disponible con traducción al Español
    ** Séance disponible avec traduction Française


  • 2:00pm - 4:00pm ET

    Adult Health Panel* (Sponsored by Kennedy Krieger Institute)

    OI experts will present an overview of medical information for adults living with OI. They will then be joined by expert panelists to answer questions from attendees.

    ** Closed Captioning will be provided for this session
    ** Sesión disponible con traducción al Español


  • 2:00pm - 4:00pm ET

    Pediatric Health Panel* (Sponsored by Shriners Hospital for Children, Canada)

    OI experts in genetics, surgery and mental health will present on an overview of what you need to know to keep your OI child's mind, body and bone as healthy as possible. They will be joined by expert panelists for a broad format question & answer session.

    ** Closed Captioning will be provided for this session
    ** Sesión disponible con traducción al Español
    ** Séance disponible avec traduction Française


  • 2:00pm - 6:30pm ET

    Kids Social Zoom

    Parents have told us how much their children miss seeing their OI friends so while parents attend the Pediatric Health Panel and Parents Meet & Greet, we invite all children to join us for a fun, interactive social gathering.
    Programming will include ice breaker games, conversation and an interactive virtual presentation from Animal Wonders Montana.
    There will be a small intermission from 4:00-4:30 ET.


  • 4:30pm - 6:30pm ET

    Parents Meet & Greet

    This session is the perfect place for veteran and new OI parents and grandparents to come together and exchange information.


  • 6:30pm - 7:30pm ET

    Virtual Lobby

    Gather together with your fellow conference attendees in a free format meeting room where you can say hello to old friends or meet new ones.


  • 7:30pm - 9:30pm ET

    Adults Social Hour

    Calling all adults (age 21+) living with OI! Gather together with your fellow OI community members for a fun evening social. During the social hour, you will have the opportunity to sip and swirl your way through a Virtual Wine Tasting (shopping list can be found on www.oif.org/adultssocialhour), solve your way out of a Virtual Escape Room, or prove one's innocence in the Murder Mystery Room led by OI community member, Susie Richard and Open Circle Theatre. There will also be additional breakout rooms for you to mingle with fellow conference attendees and catch up with old friends.


  • 10:30am - 12:30pm ET

    Sunday Morning Update and Ask the Expert Session

    Join the OIF on Sunday morning as we kick-off the 2nd day of the virtual conference with a welcome and update from OIF CEO Tracy Hart and Board of Directors Treasurer Ted Trahan!

    These announcements will be followed by the Ask the Experts portion of the session. Attendees will have the opportunity to “Ask the Experts” and join breakout rooms with experts, ask their own questions and also hear questions from their fellow OI community members. Breakout rooms will include:
    • An update from OIF Medical Advisory Council member, Dr. Laura Tosi on the OIF’s Patient Centered Outcomes Research (PCOR) projects including an update on the OIF’s COVID-19 Surveys
    • A conversation with the OIF’s Diversity, Equity and Inclusion consultant, Chaz Kellem to give your feedback and learn about the work the OIF is doing to be more inclusive to the entire OI community
    • OIF Medical Advisory Council member, Dr. Robert (Sandy) Sandhaus will answer questions you may have on pulmonary health and COVID-19
    • Deb McInerney from Hospital for Special Surgery will answer questions you may have on nutrition and OI
    • Dr. Maegen Wallace from Children’s Hospital and Medical Center in Omaha will answer any surgical questions you may have
    • OIF Medical Advisory Council member, Dr. Reid Sutton will be available to answer your genetics questions
    • Former OIF Board of Directors member, Dr. Kara Ayers will be available to answer your mental health questions

    Reminder, these sessions are conversations with experts, not telehealth visits.


  • 12:00pm - 1:00pm ET

    Fitness and OI

    In this session, medical experts and OI community members will explore their experiences safely exercising and staying fit with OI. They will discuss their perspectives on exercise preparation, safety concerns, and successful workout mindsets that may be useful for people with OI. It will include presentations from Beth Jacks, pediatric physical therapist, and Tony Jacobsen, certified personal trainer. Community member panelists will include Steffi Gonzalez, Natalie Brosh, and Greg Trahan.

    ** Closed Captioning will be provided for this session


  • 1:00pm - 2:30pm ET

    Mild OI Forum* (Sponsored by Ultragenyx Pharmaceutical)

    This forum will feature a roundtable discussion led by OI medical experts and OI community members on topics specific to mild OI including: maximizing bone strength and functional joint health, pulmonary health, hearing loss, and daily living with mild OI.

    ** Closed Captioning will be provided for this session


  • 2:15pm - 3:15pm ET

    Dental Care Panel*

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

    ** Closed Captioning will be provided for this session
    ** Sesión disponible con traducción al Español
    ** Séance disponible avec traduction Française


  • 3:30pm - 5:30pm ET

    Youth Forum Focus Group

    Calling all OI community members age 16 to 25! Come together to connect with fellow OI community members and the OI Foundation. Tell us how the OI Foundation can help YOU as you navigate the transition between childhood and adulthood. What kind of programming or resources would you like to see from the OIF?


  • 3:30pm - 5:30pm ET

    Women's Health Session

    Women living with OI have a unique set of health and wellness questions. Join OIF Medical Advisory Council member, Dr. Deborah Krakow (UCLA) for a brief presentation followed by a question & answer session covering everything from overall gynecological health to family planning to menopause. This session is limited to women with OI who are over the age of 18.

    ** Closed Captioning will be provided for this session


  • 5:45pm - 6:30pm ET

    Closing Session*

    ** Closed Captioning will be provided for this session
    ** Sesión disponible con traducción al Español
    ** Séance disponible avec traduction Française


SPONSORS

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Previous Conference Information

To view recordings of the 2020 OIF Virtual Conference sessions, please visit www.oif.org/virtualconference2020