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What is Rare Disease Day, and how can I get involved?

From wearing zebra stripes, to "Light Up for Rare," to a 5K and virtual events, find out how you can help 30 million Americans living with rare diseases.

GREENSBORO, N.C. — Editor's Note: The video above was created in 2022 about what you should know about rare diseases.

Rare Disease Day is the rarest day of the year, it's a day dedicated to raising awareness of the 7,000 rare diseases impacting 30 million Americans and 300 million worldwide.

FIGHTING FOR CURES  

Did you know out of about 7,000 rare diseases, more than 90% don’t have cures, according to the National Organization for Rare Disorders (NORD)? That’s why it’s so important to help raise awareness and shine a light on rare diseases.

WHAT IS NORD?

NORD is behind Rare Disease Day and is a patient advocacy organization dedicated to helping those with rare diseases and the originations that serve them. It’s committed to identifying rare diseases, treatment, and cure of rare diseases through programs including education, advocacy, research, and patient services.

RARE DISEASE DAY?

Rare Disease Day is held on Tuesday, Feb. 28.

HOW TO GET INVOLVED?

There are many ways you can get involved to show your support for Rare Disease Day. Yet, the most important part is just getting involved! 

Wear Zebra Stripes or Striped Clothing

The zebra is the official symbol of the rare disease community in the United States. You can dress up in your zebra best to show your support for those impacted by a rare disease.

Wearing zebra stripes can also start a conversation that helps raise awareness about rare diseases. If you do dress up, take a photo or video and post it on social media. Use the following hashtags: #ShowYourStripes #RareDiseaseDay

Credit: NORD
Show your stripes on Rare Disease Day!

Light Up the World For Rare Disease Day

Monuments around the world will light up for Rare Disease Day. You can help light up a monument or building in your area with Rare Disease Day colors which are blue, green, pink, and purple.

Find out how to register your monument to light up for Rare Disease Day.

Find out more about how to light up a monument

Light Up for Rare at Home

You can also light up your own home with the Rare Disease Day colors and encourage your friends to do the same. You can also post a photo or video on social media and use the hashtags: #LightUpForRare #ShowYourStripes #RareDiseaseDay

You can also play a film on your TV or your laptop. Take a look and play it from your window! 

Find out more about how to light up your home!

Light Up For Rare & First Responders

Fire departments, police departments, sheriff’s offices, troopers, and EMS teams can “Light Up for Rare” as well. Take a video of first responders turning on their emergency lights saying, “Light Up for Rare,” and post it to social media using the hashtags: #RareDiseaseDay @RareDiseases #LightUpForRare @WFMY 

Share Your Story 

One of the most impactful ways to get involved is by sharing your rare disease story. You can share your rare disease story with NORD

Find a full list of Rare Disease Day events

Donate

You can also donate to a rare disease organization like NORD

Shop for Rare

You can also, shop for Rare Disease Day clothes and other items. 

   

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