Trend: More rare disease patients are becoming scientists

As our understanding of the mechanisms behind even the rarest of diseases becomes more robust, what’s missing, sometimes, is the passionate physician or PhD willing to delve into an illness and come up with a treatment. Or a biopharmaceutical company willing to invest in so niche a condition.

So an increasing number of patients, and their families, are taking to the laboratory bench to combat rare disease, according to Nature Biotechnology. DIY drug discovery is on the upswing — from biohackers to patient advocacy groups getting deep into the science behind their respective rare diseases. The Nature piece follows several patients who have changed their career trajectories to focus on their rare diseases — and have made a difference.