Patient Advocate Spotlight: Tracy Hart Fosters Connections to Help Patients with Osteogenesis Imperfecta Dakota Campbell Tue, 01/26/2021 - 17:27
Tracy Hart
Tracy Hart, CEO of the OI Foundation (left)
with Ingunn Westerheim, president of the
OI Federation Europe

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.

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
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.