Discussing rare diseases is difficult at any age, but the topic can be particularly hard to grasp for kids. A recent FiercePharma article discussed a new series of children’s books intended to help families talk about rare diseases with kids. The concept is the brainchild of Rachel Pegram, a woman living with generalized myasthenia gravis (gMG), a rare autoimmune disease that causes weakness in muscles. She wanted an easier way to explain her condition with her 3 year old daughter.
Pegram worked with Alexion Pharmaceuticals, the rare disease unit of AstraZeneca, to create an illustrated children’s book called “Klara’s Talent.” The book employs rhyme and comforting illustrations to explain that gMG patients often feel weak, need rest and medicine, and experience extreme fatigue. Alexion just released the second book in the series, which follows a real-life pediatric nurse who treats young people with atypical hemolytic uremic syndrome. The company is already exploring a third book concept in the series.