On October 19-20, the OI Foundation hosted a meeting titled “Somewhere to Go for Adults with Childhood-Onset Rare Diseases: A Conversation About How We Can Fill Gaps in Care.”
Attendees worked to address the issues adult patients with a rare disease face as they navigate the health care system. Topics covered during the meeting included examining current rare disease care infrastructure; the role of technology in providing quality care; payment model issues; patient engagement issues and current care models including centers of excellence and existing consortium and network models.
We are so grateful to all who attended and participated!
Baylor College of Medicine is conducting this OI Wellbeing Study as a part of the Brittle Bone Disorders Consortium which aims to improve the lives of people with Osteogenesis Imperfecta.
