OI Canada
National OI Awareness Week is a week dedicated to raising awareness for OI and sharing your Unbreakable Spirit®. OI Awareness Week is scheduled around Wishbone Day (May 6), the international OI Awareness Day. Each year during National OI Awareness Week, OI community members request state proclamations, hang flyers, hold events, and share social media posts to raise OI awareness.
How will YOU raise OI awareness this week?
We need YOUR help to proclaim National OI Awareness Week (May 6 – 13, 2023) in every state!
To request a proclamation in your state, follow the steps below.
Alabama
Alaska
Arizona
Arkansas
California
Colorado
Connecticut
Delaware
Florida
Georgia
Hawaii
Idaho
Illinois
Indiana
Iowa
Kansas
Kentucky
Maine
Maryland
Michigan
Minnesota
Mississippi
Missouri
Montana
Nebraska
Nevada
New Hampshire
New Jersey
New Mexico
New York
North Carolina
North Dakota
Ohio
Oklahoma
Oregon
Pennsylvania
Rhode Island
South Carolina
South Dakota
Tennessee
Texas
Utah
Vermont
Virginia
Washington
Washington, DC
West Virginia
Wisconsin
Wyoming
If you have any questions, please contact Gabriela at gbeug@oif.org.
The OIF will host a Regional Conference in Washington, DC on June 10, 2023.
BBDC Research Update: Longitudinal Study
On September 22, 2022, the OI Foundation was joined by Dr. Reid Sutton (Geneticist at Baylor College of Medicine, Administrative Director and Principal Investigator of the Brittle Bone Disorders Consortium, and member of the OIF Medical Advisory Council and Board of Directors) to discuss the Longitudinal Study of Osteogenesis Imperfecta. This study, also known as the Natural History Study, is the largest research project ever conducted on people with OI. Dr. Sutton discussed the design of the study, its goals, and what researchers have learned so far. Watch this session recording below.
Participate in the Longitudinal Study of OI!
The purpose of this natural history study is to perform a long-term follow-up of a large group of people with osteogenesis imperfecta (OI). Information collected will include medical history, number of broken bones, surgeries done, medications taken, ability to walk, pain, lung function and breathing, hearing, and bone mineral density. The overall goal is to improve the health and quality of life of people with OI. Click here to learn more and determine if you are eligible to participate.
Save the Date! OIF Regional Conference: Kansas City
Saturday, November 5, 2022
The OIF is excited to announce the next Regional Conference will be held in Kansas City, Missouri, on November 5! This 1-day meeting will be co-chaired by Dr. Eric Rush and Dr. Jean-Marc Retrouvey and will be held at the Embassy Suites by Hilton Kansas City Plaza. Speakers will present on topics related to understanding and treating OI and will address pediatric and adult health concerns. More information and registration will be available at www.oif.org/event/regionalkc.
REGISTER NOW! The 2022 Virtual Conference will feature information sessions led by OI experts and medical professionals, as well as social activities where attendees can connect with others affected by OI across the globe. Learn more and register (free of charge)at www.oif.org/conference!
Registration is now open for the OIF Regional Conference in Tampa, FL on July 30, 2022!
This session is the fifth in a series meant to demystify and contextualize medical research from the Brittle Bone Disorders Consortium (BBDC). The BBDC is a multicenter initiative that focuses on understanding and providing better treatment options for osteogenesis imperfecta. The previous BBDC research updates can be viewed here
As a partner of the OIF, the BBDC has 3 major goals:
This series is intended for anyone who wants to learn more about OI medical research. We hope you will attend a future session!
New study results on drug treatment for OI published in Journal of Clinical Investigation
The study, “Targeting transforming growth factor- β (TGF-β) for treatment of osteogenesis imperfecta” was led by OIF MAC Member Dr. Brendan Lee of Baylor College of Medicine. Click here to learn more about this study.
The 2022 Unbreakable Spirit® Walk-n-Wheel will be held on Friday, July 8, 2022.
The OI Foundation will host a full day of information sessions on Saturday, July 9, 2022.
This year’s virtual conference program will include a full day of information sessions led by experts in their respective fields in a question-and-answer styled format, similar to the Ask the Expert sessions from last year. The OI Foundation’s 2022 Virtual Conference agenda will feature information sessions including Navigating a New Diagnosis, OI Research Update, Mental Health, Cardiopulmonary and OI, Women’s Health, Dental Health, and (NEW!) Transition to Adult Care. Several information sessions will feature live translation to French and Spanish. Attendees will also have the opportunity to socialize with fellow participants at social sessions created for both adults and children.
The full conference agenda and registration will be available on the OIF website in May. This online program will be free of charge for all OI community members.
The 2022 Unbreakable Spirit® Walk-n-Wheel will be held on Friday, July 8, 2022. Grab your friends and family and create a walk-n-wheel team to raise awareness of OI and funds for the OI Foundation. For more information, visit www.oif.org/walknwheel2022.
OIF Regional Conferences
The OI Foundation will host several smaller, in-person Regional Conferences around the country throughout this year. By hosting smaller regional conferences, we can deliver educational resources to our community and still provide a safe environment for gathering. The first Regional Conference will be held on July 30th in Tampa, Florida. Stay tuned for more information!
To view session recordings from the 2021 OIF Virtual Conference, please click here.
Special OIF Office Hours Event: Impact Grants 101
Thursday, March 3 | 7:00pm ET
Join us for a special office hours event this Thursday to learn more about the Jeanie Coleman Impact Grant program and how you can apply!
Click here to register to attend.
Click here to register to attend.
