The message landed in my inbox just before lunch on Day 61 of the quarantine. I was working from home…
Articles by Laura King Edwards
Gaining access to lifesaving or even life-altering treatments has never been easy for many rare disease patients — including those…
We watched from the dock as sunlight danced on the lake’s surface — a balletic performance for a small but…
The world will soon celebrate Rare Disease Day. The 2020 edition falls on Feb. 29 —…
I miss my sister. Many people in the rare disease community are surprised, even shocked, to learn that I have…
A marathon is difficult even for world-class marathoners. The best of the best have rough days, days when they turn…
I favor running analogies — even the name of this column pays tribute to the sport. But I’m not the…
The therapy development process is a marathon, not a sprint. But unlike a marathon, the road any treatment must travel…
This month marks 13 years since my sister’s diagnosis of CLN1 disease, or Batten disease. That means I’ve had…
My life changed forever 13 years ago. In the space of a few months, I started a new job, bought…