BBD | Rare Diseases Clinical Research Network

Patient Advocate Spotlight: Tracy Hart Fosters Connections to Help Patients with Osteogenesis Imperfecta

January 26, 2021

Tracy Hart, chief executive officer of the Osteogenesis Imperfecta Foundation, serves as chair of the RDCRN’s Coalition of Patient Advocacy Groups. Here, she talks about her work as a rare disease advocate, the founding of the Brittle Bone Disorders Consortium (BBD), and their work in rare disease patient advocacy and research.

Brittle Bone Disorders Consortium

BBD

osteogenesis imperfecta

Patient Advocate Spotlight

Exploring Oral Health-Related Quality of Life in Children with Osteogenesis Imperfecta Dakota Campbell Wed, 08/26/2020 - 13:52

Zoe Fang, an osteogenesis imperfecta (OI) patient, at an arcade

In a new study, researchers in the Rare Diseases Clinical Research Network’s Brittle Bone Disorders Consortium (BBD) surveyed adolescents with osteogenesis imperfecta (OI) to learn about their oral symptoms and how these affect their quality of life. Participants’ answers are clarifying the oral health needs of kids with OI and guiding future research for orthodontic interventions.

Brittle Bone Disorders Consortium

BBD

osteogenesis imperfecta

OI

Subscribe to BBD

The Rare Diseases Clinical Research Network (RDCRN) is funded by the National Institutes of Health (NIH) and led by the National Center for Advancing Translational Sciences (NCATS) through its Office of Rare Diseases Research (ORDR). The RDCRN websites are hosted by the network’s Data Management and Coordinating Center at Cincinnati Children’s Hospital Medical Center, which is funded by NCATS and the National Institute of Neurological Disorders and Stroke (NINDS) under grant number TR002818.