Physicians, researchers, and educators focused on learning more about osteogenesis imperfecta and developing new and better treatments to improve the care of patients with osteogenesis imperfecta.
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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.
BBDC Research Update: New Medical Treatments
Dr. Brendan Lee (Principal Investigator for the Brittle Bone Disease Consortium) joined the OI Foundation to discuss new drugs being studied to treat osteogenesis imperfecta and the drug development process.
Insights from Families and Caregivers Navigating Rare Diseases
To help drive research in the areas that matter most, investigators from the RDCRN asked families and caregivers to share their experiences.
Rare Research Report: August 2025
Each month, we share summaries of recent Rare Diseases Clinical Research Network grant-funded publications. Catch up on RDCRN research for August 2025.
$27M Grant Renews Cincinnati Children’s as Coordinating Center for the Rare Diseases Clinical Research Network
Cincinnati Children’s will continue as the RDCRN’s Data Management and Coordinating Center for another five years.
