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

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!

Rare Disease Week Events

Washington, D.C

On the eve of Rare Disease Day, Global Genes Staff will attend a special event, The Rare Disease Diversity Coalition Reception on Wednesday, February 28, 2024.

Rare Disease Day at NIH

Morning Coffee Reception
Co-hosted by EveryLife Foundation & Global Genes
Thursday, February 29, 2024, 10:30am
NIH Campus Building 45, Natcher Building
Bethesda, MD

The National Center for Advancing Translational Sciences (NCATS) and the NIH Clinical Center are sponsoring Rare Disease Day at NIH 2024. Rare Disease Day at NIH aims to raise awareness about rare diseases, the people they affect, and NIH collaborations that address scientific challenges and advance research for new treatments.

Thursday, February 29, 2024, 9am-5pm ET
NIH Main Campus (Natcher Conference Center)

The goals of Rare Disease Day at NIH are to:

  • Demonstrate the NIH commitment to helping people with rare diseases through research.
  • Highlight NIH-supported rare diseases research and the development of diagnostics and treatments.
  • Initiate a mutually beneficial dialogue among the rare diseases community.
  • Exchange the latest rare diseases information with stakeholders to advance research and therapeutic development efforts.
  • Shine a spotlight on stories told by people living with a rare disease, their families, and their communities.

Rare Disease Day at NIH seeks to bring together a broad audience, including patients, patient advocates, caregivers, health care providers, researchers, trainees, students, industry representatives, and government staff. This is a free event!

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: