A Rare Collection - Exhausted and Energized

Once Upon A Gene · Mar 16, 2023 · 12m

ONCE UPON A GENE - EPISODE 178

A Rare Collection - Exhausted and Energized

There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a story with a common theme.

EPISODE HIGHLIGHTS

Annie Kennedy, Rare disease advocate with the EveryLife Foundation

I have a quote in my office that says "she took her power back without permission". As I stood in the back of the legislative conference during Rare Disease Week, the opening speaker asked a room full of more than 600 advocates to, by a show of…