Why are advocacy and accessibility so important to rare diseases such as Batten Disease? On this week’s Few & Far Between podcast episode, Biorasi’s Becky Knockemus talks with Amy Fenton Parker, President and CEO at Batten Disease Support and Research Organization (BDSRA).
"There's that old saying, 'culture is how people behave when nobody's looking.' So, if you want to be effective, your [mission and value statements]...
"So we built the seatbelts before the car, so to speak, wherein we did a project to figure out ways to biocontain these organisms....
Raising awareness for rare diseases, such as Angelman Syndrome, should not be something parents, patients, and advocates have to do alone. Today's episode of...