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!
