The Cystinosis Research Network (CRN), a charity organization based out of Chicago, just finished hosting their summer travel conference, “Dream, Achieve, Inspire” International Artwork Showcase. Over 100 artists were featured, from 30 different countries, and each one of them has been affected by cystonosis, a rare, genetic-metabolic disorder. The conference has, indeed, left Chicago, but will soon set up shop in Brazil, Mexico, Spain, and the United Kingdom.
One big problem (of many) with rare diseases is the lack of awareness. The “Dream, Achieve, Inspire” Art Collection is designed to bring together artists with cystonosis in hopes of spreading awareness and forming a community, said Exhibit Chairperson, Katie Larimore to the Traveler’s Rest Tribune.
Kids and families from all over came together in Chicago to share their works of art–paintings, sculptures, and figurines. Leading experts and doctors were also invited to join in the fun, and most importantly, discuss research and symptom management techniques. The event has received worldwide recognition and appreciation, proving that sometimes you’ve got to think outside of the box when spreading awareness.
Here are some rather over the top ways we thought of to help you get the word out about your rare disease like cystinosis:
Write a play about a rare disease and create characters inspired by various body parts… People shouldn’t find that weird.
Produce a song, become really famous, and then sing it at the President’s Inauguration (and be really graphic in your details. For those hereditary angioedema patients out there, I’d suggest leading into the bridge with something like “Swollen bum can’t get me some…” You guys take it from there.)
Go streaking around your block, shouting fun facts about Cryopyrin-Associated Autoinflammatory Syndromes CAPS. You’ll grab people’s attention, that’s for sure…
Hide out in dressing rooms, and when people come in to try on clothes, force them into a corner and recite all the research you’ve found on treatment options until they’re crying on the floor with hope and happiness.
Wear a spaghetti wig to work. When people give you weird looks, tell them this is what it feels like sometimes to have a rare disease (not the covered in spaghetti bit, but ya know, feeling isolated and different…) When they reply with confusion, simply tell them it’s a metaphor and that you’re not surprised they don’t get it.
And now it’s time for you to come up with your own creative ideas on spreading awareness! The world needs to know, so get out there, loyal readers. Throw open that front door, tear off your clothes, and expose to the world what DESERVES to be brought to light!
Share the creative ways you got the word out on your condition, along with this article of course, to your social network!