Get Involved

10 Ways to Show Your Stripes!

1. Share your stories

2. 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.

3. Stripe your organization’s website for Rare Disease Day

4. Plan to attend an advocacy event

5. 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)

6. Change your profile picture using our Facebook Profile Picture Frame!

7. Print and use these Show Your Stripes stickers

8. Print and color in this zebra coloring sheet.

9. Post messages on social media – here are some tips and sample posts 

10. Pitch your local media outlets about your Rare Disease Day event and/or your personal story using these templates

Download our Social Media Toolkit for a comprehensive guide on using social media in honor of Rare Disease Day.

Social Media Post Templates

For more sample posts, download our social media toolkit!

• Every stripe has a story. I have _______, one of the 7K+ #rarediseases. #ShowYourStripes #RareDiseaseDay {upload photo of yourself}
• This year for #RareDiseaseDay, #NORD (@RareDiseases) is asking the #raredisease community to #ShowYourStripes. This is me. I have ______, a #raredisease. {upload photo of yourself}
• My stripes are rare. I have _____, a #raredisease. #ShowYourStripes #RareDiseaseDay {upload photo of yourself}

Graphic Design

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.

Download Rare Disease Day Graphics

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:

• Submit Your Event. Submit your event on our website so that we can share the impact of Rare Disease Day across the United States. We may share your event on social media as well!
• Share! Leading up to your event and during your event, share updates on social media with photos using #RareDiseaseDay. If you are new to social media, download our 2019 toolkit.
• Write to NORD. After your event, send us your photos for future use on this website and in our marketing materials. This year’s event may inspire someone to get involved in future Rare Disease Day activities. Help us to get more people involved! Pictures can be sent to rddus@rarediseases.org.

Press Kit

• Rare Disease Day Sample Letter to the Editor
• Rare Disease Day Sample Press Release – Patient Story
• Rare Disease Day Sample Press Release – Supporter

Branded Packages

• Rare Disease Day Official Logo
• Rare Disease Day Official Style Guide
• Rare Disease Day Official Poster
• Frequently Asked Questions Flyer
• Rare Disease Day Fact Sheet
• Rare Disease Day Stickers (to download and print on a 3X4 Avery Label)
• Social Media Toolkit 
• Infographics & Shareable Images
• EURORDIS Information Booklet
• Global Theme Materials
• 2019 Official Poster

Downloadable Activities

• Rare Disease Day Logo Coloring Page
• Rare Disease Day Zebra Coloring Page
• Rare Disease Day Crossword Puzzle and Answer Key
• Rare Disease day Word Search and Answer Key

Sponsorship Opportunities

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 amoore@rarediseases.org.

Donate

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.

Fundraise

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 donate@rarediseases.org.

How-To Set Up a Facebook Fundraiser

1. Visit https://fb.com/fund/NationalOrganizationforRareDisorders
2. Click the Raise Money button
3. Set a goal that you think is attainable
4. Set an end date of February 28, 2019 – Rare Disease Day!
5. Describe why you’re supporting NORD on Rare Disease Day
6. Create your fundraiser

Tips for Facebook Fundraisers

Once you’ve launched your fundraiser, make it successful with these five tips:

1. Spread the word! Invite your friends to join your fundraiser and share information about it on your page regularly.
2. Make it personal! Think about and share your personal story and motivation to fundraise for NORD.
3. Up the ante! Increase your goal amount if your fundraiser is doing well.
4. Match the goal! Consider working with your friends and family by making a matching gift.
5. Thank your friends! Thank each donor, share progress updates tagging friends, and send private messages to say thank you.