The purpose of Rare Disease Day® is to harness the creative energy of the millions of people around the world with rare diseases — and the millions who care about them — to raise awareness and generate action. You can help us achieve this goal throughout the year by doing any of the following things.
The zebra is the official symbol of rare diseases in the United States and is noted for its black and white stripes, which are central to its uniqueness. Everyone has his/her own stripes, those characteristics that make each individual distinct. While each of the more than 7,000 rare diseases are unique, there are many commonalities that unite patients, families, caregivers and supporters. In the spirit of raising the profile of the rare disease community at large and celebrating Rare Disease Day, this year NORD is promoting a variety of ways in which individuals, organizations and groups can "show their stripes."
10 Ways to Show Your Stripes!
Wear striped gear (clothing and/or accessories with stripes) – and spread the word for others to wear stripes on Rare Disease Day in support of the rare disease community. Take a picture and post on social media using the hashtags #ShowYourStripes and #RareDiseaseDay.
Stripe your organization’s website for Rare Disease Day
Dare your company or organization to collaborate on a major striping concept for Rare Disease Day (for example, wrap a train car in stripes, drape your workplace’s lobby in striped banners, light up the exterior of a building with stripes)
Change your profile picture using our Facebook Profile Picture Frame!
Post messages on social media – here are some tips and sample posts
Pitch your local media outlets about your Rare Disease Day event and/or your personal story using these templates
You can get involved in Rare Disease Day by participating in conversations and campaigns on social media. Use our social media toolkit for example posts, social media best practices, downloadable graphics, and more! To make the largest impact on social media, be sure to remember to use #ShowYourStripes and #RareDiseaseDay in all of your posts.
Download our Social Media Toolkit for a comprehensive guide on using social media in honor of Rare Disease Day.
For more sample posts, download our social media toolkit!
The link below will direct you to a compressed zip folder that contains graphic design elements that you may feel free to share on social media or upload to your organization’s website. The folder will automatically download onto your computer when you click the link below.
One of the best ways to get involved in Rare Disease Day is to host an event in your community. The more events that are planned, the more awareness we can raise. Host an event in your town, school, or company to raise awareness for rare diseases on and around Rare Disease Day!
Need inspiration before hosting an event? Visit our Get Inspired page for examples. After you have made your plans, make sure to let people know about it! Use these tips to spread the word about your event:
Each year NORD offers a press kit and downloadable resources to help you reach out to your local media, share your story online, and provide you with resources to download for events and activities. Sharing experiences helps people understand what it is like to live with a rare disease. You can play an important role in this global awareness campaign by contacting TV, radio, newspaper or online reporters, or bloggers with information about Rare Disease Day and your particular story. Please feel free to use these resources and to share them with others.
NORD is the Official U.S. Sponsor of Rare Disease Day. Our efforts in the United States would not be possible without the generous support of individuals and organizations. Your donations help NORD to host this campaign each year and to provide resources for the rare disease community in the U.S. to take part in. For more information about how you can support Rare Disease Day in the United States, read more below.
If your company or organization is interested in being a sponsor for Rare Disease Day in the United States, please reach out to NORD’s Vice President of Development, Alexa Moore, at [email protected].
Your donations help NORD to host this campaign each year and to provide resources for the rare disease community in the U.S. to take part in. Make a donation here.
Individuals and groups often host fundraisers for NORD on behalf of Rare Disease Day. Interested in spreading social awareness while also fundraising for NORD? Use the instructions and tips below to host a Rare Disease Day Facebook Fundraising for NORD. For more information about fundraisers outside of Facebook, please contact NORD’s Development team at [email protected].
How-To Set Up a Facebook Fundraiser
Tips for Facebook Fundraisers
Once you’ve launched your fundraiser, make it successful with these five tips:
