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Celebrate Rare on Rare Disease Day (Feb 29th)

This year, Rare Disease Day® will be celebrated on February 29, 2024! Though usually observed on February 28th, we get to celebrate on its rarely occurring official date that happens only once every 4 years on a leap year.

Our biggest call to action this month is letting your voice be heard not only around the world, but also on Capitol Hill this March in Washington, D.C.!

As we kickoff Rare Disease Month, we wanted to share some of the ways you can help this month:  

  • Share Your Story — Letting our voices be heard is critical! You never know who your story will reach or impact. We encourage our community to share your HHT journey from social media, or consider submitting your story to be featured on our blog.We are organizing an HHT Capitol Hill Day in Washington, D.C. scheduled for March 13, 2024. We are calling upon volunteers to help join our cause. Additionally, community members are welcome to stay and support our briefing with Senator Blumenthal on March 14th. If you are interested in participating in this event, click here to complete our online form.
  • Host a Facebook Fundraiser  In honor of Rare Disease month, we ask that you consider activating your network of family and friends to support our cause by hosting a Facebook fundraiser. Learn how >>
  • Show You’re Rare! Head over to our store to browse a variety of Rare Disease Month items to let the world hear us and help spread awareness!
  • Participate In Research — One of the biggest ways you can help create a better tomorrow is by participating in research TODAY! Visit the clinical trials section of our website to learn more about the trials that are currently underway.
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