Award-Winning Health Journalism

From Discovery to Delivery

Photo collage of a scientist developing a rare disease drug

How drugs for rare diseases make it to the people who need them Fact checked by Shannon Sparks Known as “butterfly children,” their skin is so delicate it tears at the slightest friction. Everyday tasks — dressing, walking, even eating — can cause blisters and cuts. These children have a rare disorder called epidermolysis bullosa, […]