Coordinating Care for a Person with a Rare Genetic Disorder

When a genetic disorder is identified in a person, there may be a sense of relief at the end of a diagnostic odyssey. However, there is often no playbook or manual to guide the person, their family, and providers. Fortunately, Patient Advocacy Groups (PAGs) or Disease Advocacy Organizations (DAOs) provide a community to fill many gaps. This talk will hopefully be received as a pep talk to encourage people to coordinate care even when a person is unique.

This online program is free and open to Mass General staff, patients, and the general public. No registration needed.

Time: 12:00 PM – 1:00 PM EST

Speaker: Angela E. Lin, MD, FACMG

Attend the Event on Zoom

Have Questions About the Topic? Please submit your questions to us before the program, so that the speaker may address them during the session.