Girl with the Butterfly Tattoo – a Column by Lena Riedl
Lena is a 26-year-old Austrian born with the rare, genetic skin condition epidermolysis bullosa. She works with DEBRA Austria, an organization that supports “butterfly children,” and with another NGO which functions as an umbrella organization for rare diseases in Austria. She loves to be with family and friends, travel, sing, do sports, eat brunch, read, and spend time in solitude — especially if near the sea.
A few days ago, a friend working in healthcare communications asked: “What does rare mean for you?” It got me thinking. I answered: “Rare is something special, something unique. Something ... Read more