Think of 10 people you work with, 10 people you went to school with, or even 10 of your social media followers. Now, consider this: statistically, one in every 10 Americans is living with a rare disease.
Rare diseases aren’t rare. In the United States, a disease is considered rare if it affects fewer than 200,000 people, but with more than 10,000 known rare diseases and more than 30 million Americans living with one, the impact is widespread. Many of these individuals face years without a diagnosis and experience ongoing health challenges, each with their own financial costs. Many struggle with limited or nonexistent treatment options which is an isolating experience. In fact, 65% of rare disease patients in a recent National Organization for Rare Disorders (NORD®) survey said their disorder impacts their ability to attend and enjoy activities with family and friends.
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 to a patient’s symptoms, a horse. Now, we know that one in 10 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 and encourage people to consider that what they might be dealing with is a rare condition.
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Rare Disease Day® is Feb. 28, 2025 — an international day to raise awareness and inspire action for those living with rare diseases. Someone in your life may be facing a rare disease, whether they’ve shared their diagnosis or not. This is your chance to show up in support. Join us in raising awareness and showing your stripes for them in the following ways.
- Raise Awareness at School, at Work, and in Your Community
Our three playbooks — designed for schools, workplaces, and community groups — offer step-by-step guidance to help you educate and engage the people in your life. From organizing events to incorporating rare disease awareness into lesson plans or team meetings, these toolkits make it easy to get the conversation started.
- Schools: Teach students about rare diseases with age-appropriate activities, stories, and zebra-themed dress-up days.
- Workplaces: Host a lunch-and-learn session, encourage colleagues to wear stripes in solidarity, or spotlight rare disease stories in internal communications. Your company can even start a fundraiser that matches employee donations to NORD.
- Communities: Organize a local event or table at an existing event, partner with businesses to display Rare Disease Day posters, or rally your neighborhood, athletic club, or place of worship to participate in your Rare Disease Day awareness efforts.
Don’t forget you can gift your friends and family with NORD Rare Disease Day swag to really get the conversation started. Your purchase also gives back to NORD.
- Show Your Stripes Online
Spreading awareness on social media is a powerful way to make an impact. Explore the Faces of Rare wall to read and honor the stories of individuals living with a rare disease. Then, use NORD’s social media toolkit to help amplify their voices—download ready-to-share graphics, sample messaging, and hashtags to show your support.
Want to take it a step further? Dedicate a post to someone in your life affected by a rare disease or share why Rare Disease Day matters to you. Every post helps raise awareness!
- Donate to NORD
Supporting the rare disease community doesn’t stop at awareness — your generosity can drive real change. By donating to NORD, you help fund research, advocacy, and patient support programs that improve the lives of people for whom life with a rare disease is 24/7, 365. You can also encourage friends, family, or colleagues to contribute and create a ripple effect of impact in your community.
Pledge your Rare Disease Day contribution and explore ways to donate here.
💰💰Donations made before March 1 will be matched dollar for dollar! 💰💰
- Light Up for Rare
Want to make a bold statement this Rare Disease Day? Get involved in Light Up for Rare, where landmarks and buildings across the country will be illuminated in official Rare Disease Day colors. If you know of a local location that could participate, learn how to reach out and help bring this initiative to your city!
- Attend a Rare Disease Day event!
Rare Disease Day is an opportunity to become part of the rare disease community and truly stand together by attending an event. Here are some that NORD is hosting:
- Feb. 18: Policy and Advocacy Webinar
- Another major way you can support people with rare diseases is to help them advocate for laws and policies that increase funding and resources for drug development. NORD is here to make understanding how to do that easy. Also, we will roll out our 2025 State Report Card, which evaluates how effectively states throughout the U.S. are serving people with rare diseases in need of affordable, quality health care. Attend the webinar to learn how your state did.
- Feb 28 and March 1: Live near Austin, Texas? Come out and join a 5K run followed by a beer with actor Jack Quaid. If you make a donation of $100, you will get to attend an exclusive advanced screening of his new movie, Novocaine. Learn more here.
- Make a donation by midnight on Rare Disease Day and Paramount Pictures will match it dollar for dollar — doubling your impact for the one in 10 Americans living with a rare disease. Donate now!
- Want to find more opportunities? Find an in-person event near you, or attend a virtual event, by consulting our Rare Disease Day event calendar.
No matter how you choose to show up on Feb. 28, every action counts. Together, we can shine a light on the members of the rare disease community where we live, foster greater understanding of their needs, and inspire necessary change. Remember NORD’s motto: Alone we are rare. Together we are strong.®