Rare Disease Day 2025

Rare Disease Day is almost here! Rare Mamas stands together with the rare disease community to fight for equity for Rare Disease patients! In honor of Rare Disease Day 2025, check out all of the exciting opportunities and events to raise awareness for rare diseases and uplift our rare community!

I LOVE SOMEONE RARE!

Here, at Rare Mamas we are spreading love and awareness!

Rare Mamas I Love Someone Rare

Use the template below and make your own!

NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)

Ways to get involved with Rare Disease Day through NORD:

Tell your rare disease story. NORD wants to know about your unique journey and your message to the world on Rare Disease Day. Your story may be featured on NORD’s website and social media channels.

Share what you’re doing for this special day on social media by tagging NORD’s handles and using #RareDiseaseDay and #ShowYourStripes in your posts.

Access NORD’s resources for guides on sharing your story with local news outlets, graphics you can use on social media, and even printable activities for children!

www.rarediseases.org/rare-disease-day/

RARE ACTION NETWORK EVENTS

Check out all of The Rare Action Network’s local state events for Rare Disease Day.

https://rareaction.org/events/list/

RARE DISEASE WEEK ON CAPITOL HILL 

Head to Washington D.C for Rare Disease Week on Capitol Hill from February 24 to February 26, 2025! Rare Disease Week is the opportunity for advocates to meet with their federal lawmakers, connect with other rare disease patients and caregivers, and learn more about rare disease policy priorities. You can view the agenda and register to attend in person on the Rare Disease Week webpage or you can register to attend virtually here . Rare Disease Week includes the Pride in Rare Meet Up, Rare Reels Screening and Reception, Legislative Conference, YARR Meetup, Rare Disease Congressional Caucus Briefing, meetings with members of Congress, Group Photo on Capitol steps, Rare Artist Reception, and two days of FDA-NIH Rare Disease Day 2025.

Rare Disease Day Official

For more information about Rare Disease Day, visit:

https://www.rarediseaseday.org/

Let’s show our love and advocacy for Rare Disease Day 2025!