Text: Bertrand Tappy
Photo: Mister Corminboeuf

The fight against rarity has only just begun

“What is rare is valuable.” Whether in reference to ocean access, a gold mine, or a plot of fertile land, this saying summarises nearly all of human history.

By changing just one word, we are left with “what is rare is expensive”. This seemingly minor shift nevertheless points to the incredible healthcare challenge posed by orphan diseases. After all, how much can you matter if you are the only one out of more than 10,000 people who needs a treatment? How can you convince the pharmaceutical industry to invest tens of thousands of dollars in research to improve the lives of patients facing the same struggle as you every day? Sometimes, rarity doesn’t convey fame and wealth. It can also mean injustice, patience, and courage. That’s exactly why we decided to write a special report (p. 11) on those who dedicate their lives to helping people suffering from diseases whose names – when they even have a name – more often result in confusion than empathy among the general public.

On a more personal note, I’d also like to tell you how grateful I am for the past few years during which it was my privilege to create and cover “In Vivo” – and to watch it flourish. I’ll be leaving to take on a new challenge, but the memories I’ll keep with me from the magazine are absolutely priceless. ⁄