Why is the sharing of data so crucial to #raredisease research? Tune in for today's full episode of Few & Far Between. Episode 10 features Sharon Terry, CEO at Genetic Alliance and #pseudoxanthomaelasticum (PXE) advocate.
"What can I contribute that my doctor can't contribute? And that's a real 'a-ha' moment when we share with them how they're the experts...
“I think one of the key insights and observations you make when you have a child who's sick and you spend time with other...
"I hope we're moving into the age of the generalist, where knowing how to learn and learning how to learn are more important than...