April 20, 2022

Panel recording of Rare Disease Showcase 2022

Our president Nora participated in the patient advocate panel on experiences of diagnosis, access and care

In many ways, this final session was the highlight of the showcase. We were fortunate to hear from those directly affected by rare diseases as patient advocates shared their experiences and opinions on problems and solutions in the rare disease space.

Rick Thompson

CEO Beacon

A big thanks to Beacon For Rare Diseases for hosting the panel and inviting our president. It was an inspirational session and an honor to share the stage with fellow advocates Zainab Alani, David Edward Rose, Dan Dry Dock Shirley, Amber Freed, Concy Bwomono, and Vesna Aleksovksa.

View recording