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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.

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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.

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Rare Research Report: December 2022

Each month, we share summaries of recent Rare Diseases Clinical Research Network (RDCRN) grant-funded publications. Catch up on the latest RDCRN research. 

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Training Program for Clinical Research in Rare Disease Launches New Session

The National Institutes of Health-funded R25 Rare Disease Clinical Research Training Program is launching a new training program for clinical research in rare disease. Now in its seventh year, this year-long, hybrid, free program is designed to support new investigators in the field of rare disease clinical research.

Screenshot from a presentation on the Rare Diseases Research R25 Curriculum Grant

RDCRN Launches Contact Registry to Connect Patients, Researchers and Advance Rare Disease Research

The Rare Diseases Clinical Research Network (RDCRN) is launching a contact registry to connect rare disease patients with researchers and advance rare disease research. The registry will collect and maintain the contact information of people who want to receive information about rare diseases research. It will also inform participants about opportunities to participate in research.

Three icons featuring a trio of silhouettes, a chemistry flask and stethoscope, and a contact card appear next to the text, Join Our Contact Registry - Learn about opportunities to participate in our research, receive information about our work, connect with our consortia and patient advocacy groups. rdcrn.org/registry appears next to the Rare Diseases Clinical Research Network logo

BBD Updates

Newsletter of the Brittle Bone Disorders Consortium

Spring 2020

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