I don’t feel like I heard the word 'rare' nearly as much growing up as I do now. When something surprised my grandmother, she used to say “oh isn’t that rare?”.
Of course after I wrote that sentence I realized I should fact-check myself (at least I am learning something from the presidential debates). So it turns out the use of the word “rare” peaked around 1900, which would certainly fit with my impression of it as a grandmotherly term.
But, use of the word has been on the decline ever since. So why do I hear it so much in my world?
My daughter is rare. At age 7 she sold pet rocks and jelly-jars-turned-votive-candle-holders in honor of wounded veterans. She raised $374 that day.
Bryan is rare. He is an Army Veteran who was awarded three purple hearts. He is now living as a triple amputee in Staten Island. He is rare because of the sacrifice he made for his country, and he is rare because he accepted my daughter’s gift with profound gratitude, and not a hint of regret.
The Northern Hairy-Nosed Wombat is rare. There are only 115 left in the wild. (By the way, did you know that there was once a 2.5 ton wombat that roamed the Australian continent? The hairy-nosed variety I describe here only weighs in at a max of 40 kg.)
A bacon cheeseburger can be rare – both if there aren’t very many, and if it is pink in the middle. (Two completely different origins, by the way: latin vs. proto-germanic!)
It used to be that awards were rare. But today schools give a prize to each soccer player. It has become rare for an award to be rare.
So how about rare disease?
Globalgenes.org says that “there are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day. 30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population.”
So now I am wondering if even rare disease is rare…
But of course it is – we who work in the rare disease community know all too well the time that separates the onset of symptoms and diagnosis. We understand the distance that separates each patient. Interestingly, that is the precise origin of the word “rare.” The latin word “rarus” means “widely spaced.”
Awareness of rare disease has skyrocketed since the Orphan Drug Act improved incentives for drug companies to develop treatments for rare disease. The existence of Rare Disease Day is a testament to this increased awareness.
At Vencore Health Analytics (VHA), we are working hard to connect rare disease patients and appropriate therapy. It is just one piece of the answer though. We must continue to work together if we want to help the multitudes of rare disease patients. We will be sharing the stories of several members of the VHA Rare Disease Consortium in the coming week.
Please join us as the VHA blog gives voice to our guest writers, but be warned, you might want a box of tissues on hand…
Tara Grabowsky, MD
Chief Medical Officer, Vencore