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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. — 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 Monday, Feb. 28.

HOW TO GET INVOLVED?

There are many ways you can get involved to show your support for Rare Disease Day. But 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 of 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!

Zebra 5K Run, Walk, Roll or Stroll

You can sign up for a virtual 5K to help support rare diseases and Rare Disease Day. The New Hope Run Club and Avery’s Hope are teaming up to sponsor the event. The event costs $35 to participate. The event takes place Sunday, Feb. 27.

Sing up for the virtual 5K

Find a full list of Rare Disease Day events

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 and with WFMY News 2 and by sending an email to cmhodgin@wfmy.com

NORD’s Virtual Rare Disease Day Event

Grab your favorite zebra print shirt or toss on a striped scarf and meet NORD online for a community gathering marking the 12th annual Rare Disease Day! This one-hour event will be packed with entertainment from a star-studded guest lineup and offer a place to connect and chat with other rare community members and allies. This is a free virtual event and you will need to register for it. It will be held Monday, Feb. 28 from 1:30 p.m. – 2:30 p.m.

Register for NORD's Rare Disease Day event 

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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