World Rare Disease Day

Rare Disease Week, held on the last week of February each year, is the lead in to World Rare Disease Day (February 29th). It is an annual observance to raise awareness for 400 million people affected by rare disease globally.

February was picked for this observance because it is the rarest among months – it is the only month that does not have 30 or 31 days. In most years, World Rare Disease Day falls on February 28th, but this year, a Leap Year, it is on February 29th. It’s extra rare.

Participating in Rare Disease Week is an important way to raise awareness and advocate for those affected by rare diseases. It’s an opportunity to educate others about the challenges and needs faced by our community, including finding better diagnosis, treatments, and social support.

Your participation can increase empathy, promote research funding, and drive legislation for policy changes. You can contribute to this global movement that aims to improve the lives of millions living with rare diseases. You can bring us another step closer to a world where no disease is too rare to care about. 

Here’s what can you do to help elevate the cause and shine a light on rare disease patients and caregivers around the world:

If you are going to the free NIH RARE Disease Day Event on February 29 in Washington D.C. be sure to visit the Global Genes table. And then join Global Genes and EveryLife Foundation for a mid-morning coffee reception at the NIH for a great way to meet others within the community.  

Not able to attend in person?

Connect with the community and draw awareness for rare disease by sharing your Zebra Tales. On our social media and in newsletters, Global Genes will be encouraging people to wear a zebra tail to represent their support for rare disease and share their rare disease advocacy story – whether patient, advocate, or caregiver.

Or if you’re crafty you can create your own zebra tail from yarn, fabric etc. Find DIY crafting instructions here

Take a photo or video – tag @globalgenes and use hashtags #ZebraTales #CareAboutRare to be reshared, and tag a friend to keep the momentum going.

Download Your Zebra Tale Download Coloring Version of Zebra Tale

Rare Disease Week Begins

Mackenzie Abramson, Senior Manager of Research Program Communications for Global Genes, rare patient and advocate, takes on Washington, D.C. during Rare Disease Week on Capitol Hill, leading up to Rare Disease Day at the NIH.

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Rare Disease Week Continues

Mackenzie Abramson, rare patient and advocate and Global Genes staff member, continues her Rare Disease Week adventures on Capitol Hill, as well as Rare Disease Day at the NIH.

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What has Global Genes staff been up to during Rare Disease Day?

Mackenzie Abramson headlined Rare Disease Week activities on Capitol Hill and at the NIH for Rare Disease Day, while other Global Genes staff joined in rare disease activities throughout the country!

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Encourage Your Organization to Get Involved

Email a call-out to your organization and partners to get involved, or post on social media. Get some ideas from our Rare Disease Day Media Kit

In-Person Engagement

Join us in-person at a live event, submit your events so we can help amplify, or see where Global Genes will be during Rare Disease Day!

Interact With Us on Social Media

Show us how you are celebrating and honoring World Rare Disease Day on social media. Tag us @GlobalGenes and make sure to use the hashtags #RareDiseaseDay #CareAboutRARE and #ZebraTales for a chance to be highlighted on our social media channels.

We will be sharing rare disease stats, individual and organization stories, and events throughout the month of February to spread awareness about rare disease on our social media accounts. Follow us on social media: