Resources
"Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.
Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.
Rare Disease Day is observed on February 29 this year—the rarest day of the year. Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organization partners. Rare Disease Day provides an energy and focal point that enables rare diseases advocacy work to progress on the local, national, and international levels." ~ www.rarediseaseday.org
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The Rare Action Network® (RAN) is the nation's leading rare disease advocacy network working to improve the lives of the more than 25 million Americans living with a rare disease. Sign petitions to Congress and your State legislators to support rare disease initiatives today!
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Or ask your favorite hometown brewery to support Zebra Hop for a rare cause.
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Rare Disease Day on the Today Show (Register Here)Thank you to everyone who showed up for support of #ShowYourStripes in NYC at the Today Show on Thursday, February 29, 2024! (Pictured: Julia, Marissa, Kristen, Kayla, and Linda Cohen...and a Rare Zebra!)
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Purchase your official SWF Rare Day Merch in the shop. Best of all, a portion of all proceeds benefit our research, education, events, and programs. English, Españiol, and French are available.
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Download a variety of social media images to share on your pages. English, Españiol, and French are available.
Suggested posts:
Embracing my uniqueness on Rare Disease Day with The Sturge-Weber Foundation. Remember, I may be rare, but I'm also one in a million! Join me in spreading awareness and support for those living with rare diseases. #RareDiseaseDay #SturgeWeberFoundation #lamRare -
Rare Disease Day is held on the last day of February. See you next year! Resources at www.rarediseaseday.org and www.rarediseaseday.org
