Rare Disease Day is All About Sharing Information

Get ready to show your support for everyone who has been diagnosed with a rare disease. Rare Disease Day is February 28 and we want to make sure people living with rare diseases are visible. So don’t forget to show your stripes!

Medical professionals are taught when they hear hoofbeats, they shouldn’t expect to see a zebra. Look for the more common answer, a horse. But the vasculitis community knows that there are plenty of zebras in the world.

We want to bring awareness to rare diseases and help doctors realize that when you count all rare diseases collectively one in 10 people have a rare disease. We hope this statistic will spur them on to investigate a little further when they have a patient with multiple symptoms that can’t be explained. Better yet, we would love to see the doctor ask for help and partner with an expert in rare diseases to find the answer.

The VF has some ideas for showing our stripes:

Let’s flood social media on February 28 with photos of us wearing striped apparel. Don’t forget to include your vasculitis story and tag the VF.

Our creative people can display their art on social media featuring a zebra or stripes to represent their vasculitis journey. Display a sculpture in your yard or neighborhood and tell people what it’s all about. Knit a scarf for your doctor and include a note about vasculitis and the importance of considering rare diseases when making a diagnosis.

Bakers can make cupcakes or cake pops decorated with stripes and deliver them to a doctor’s office or hospital staff with a note about vasculitis and rare disease day. Even if you don’t bake, you can buy doughnuts at your local shop and deliver them with a note.

Don’t forget to get photos and share them on social media!

And if you need help with that note, you can start here:

Dear HCPs

My gift/note/treat today is a reminder that today is Rare Disease Day – a reminder that one in 10 people are diagnosed with a rare disease. I was diagnosed with vasculitis. It was not easy to get a diagnosis, but I found a doctor who would listen to me and took my symptoms seriously. I found someone who would partner with me in my healthcare. Today I want to encourage others to do the same – to keep an open mind and to keep probing when there aren’t any easy answers. Patients know their bodies and they know when something is wrong. Sometime when you hear hooves, it is in fact a zebra!