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Show Your Stripes® for
Rare Disease Day with NORD

Zebra at rare disease event.Three women standing together smiling.
Photo of man in community.Penn Medicine rare disease community photo
Rare disease awareness event photo.KBG Syndrome Foundation Community Members Photo
young boy smiling outdoors in parkYoung girl smiling outdoors in park.
154 Days
...until Rare Disease Day
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RARE Is Not Rare

One out of every 10 Americans is living with a rare disease. Worldwide, there are more than 300 million people with rare diseases. Too often, these individuals and families are left isolated and without answers to their medical questions. It doesn't have to be that way.

Rare Disease Day is a global initiative to raise awareness and generate support for everyone who is on a rare medical journey. It takes place on the last day of February, which this year is February 29th, the rarest day of the year.

The National Organization for Rare Disorders (NORD) is the trusted voice of the more than 30 million Americans living with a rare disease. We are proud to be the official U.S. partner for Rare Disease Day. We invite you to read on to learn how to #ShowYourStripes in support of those with a rare disease.

Get Involved
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Rare Disease Day Instagram post image.

Show your Stripes®

The zebra is the official mascot for rare disease patients. Historically, medical professionals were told that when they “hear hoofbeats,” they should not expect to see a zebra. In other words, look for the more common answer, a horse. Now, we know that one in ten Americans is actually a zebra! It might not be obvious when you look at us, which is why we show our stripes to raise awareness.

Wearing stripes can start a conversation that helps others learn about the prevalence and challenges of rare diseases. Take a picture of your striped look and share it on social media with the hashtags #ShowYourStripes and #RareDiseaseDay to join this celebration of the many faces of rare disease.

Rare disease community members networking event.
young girl smiling outdoors in park
young girl smiling outdoors in park
Rare disease awareness event attendees photo.

Faces of Rare

Who do you Show Your Stripes for? We want to hear from you! Behind every face is an extraordinary story and sharing your experience, struggles, and triumphs can help impact change.

Share Your Dedication

Rare disease awareness event photo.
group of women at rare disease event
young boy smiling outdoors in park
rare disease awareness event attendees photo
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rare disease community members photo

Light Up for Rare | International Campaign of Lights

Each year, thousands of buildings, landmarks, homes, and communities around the globe light up in honor of Rare Disease Day. Check out NORD's guide with tips on how to Light Up for Rare and join this global chain of lights.

Join the Campaign

Find an Event Near You

Share or Attend an Event

Rare Disease Day events are happening all month long! Find a local or virtual event to attend or add your own to our calendar.

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Take Action

NORD was founded more than 40 years ago to advocate for equitable health policies that improve the lives of all rare disease patients and families. Advocacy is what Rare Disease Day is all about, and we encourage you to use your own voice today in honor of this moment.
Join NORD’s Rare Action Network® to connect with rare advocates near you and take part in our action alerts—sending messages to your representatives about key bills and issues.

In the News

Milwaukee dad brewing Zebra Hop beer.

Everyday Hero: Milwaukee dad, brewer creates 'Zebra Hop' beer in honor of his son

Feb 20, 2024

A Milwaukee brewery is working to raise awareness and money to help people living with rare diseases. The cause is personal for Jonathan Kowalske, one of the owners of Component Brewing in the city’s Bay View neighborhood. Shortly after Kowalske opened the business with his two cousins in 2018, his son Mac was born. Mac was diagnosed with Malan Syndrome. To put in perspective just how rare the condition is, Mac is one of only about 200 people worldwide who have been diagnosed with Malan Syndrome.

Read Article
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Rare Disease Day Interview with NORD President and CEO Peter L. Saltonstall and Boston Children’s Hospital’s Dr. Olaf Bodamer

March 3, 2023

Watch CNBC’s Rare Disease Day interview with NORD President and CEO Peter L. Saltonstall and NORD Rare Disease Center of Excellence Director, Dr. Olaf Bodamer of Boston Children’s Hospital, where they shared how rare disease affects 1 in 10 Americans and why everyone, including the pharmaceutical industry and corporate America, should invest more dollars and attention into rare disease research and treatment.

Read Article
National Organization for Rare Disorders