Events

Rare Disease Day

Rare Disease Day

February 28

On Rare Disease Day, people around the world work to advocate and raise awareness for those living with rare diseases. Here you can find ways to join the movement. 

Find Information & Materials

Visit RareDiseaseDay.org

  • Download materials to share on social media
  • Rare Diseases Statistics
  • Search for events

Find Information & Materials

NORD’s Show Your Stripes Campaign

  • Download materials to share on social media (under Resources)
  • Rare Diseases Statistics
  • Search for local NORD events

Advocacy

Rare Disease Week on Capitol Hill
February 28 – March 2

Hosted by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation for Rare Diseases). Advocates from across the US make their voices heard by their Members of Congress. 

Learn More

Sign up to view the event virtually.

 

Rare Disease Legislative Advocates Resources 

Interested in becoming a stronger advocate? Sign up to receive information about programs and services to help.

Rare Advocates Resources

Advocate for Angelman syndrome

Virtual Activities & Events

Rare Disease Day at National Institutes of Health

February 28
9am – 5pm EST

This event aims to raise awareness about rare diseases, the people they affect, and NIH research collaborations that address scientific challenges and advance research for new treatments. RDD at NIH 2023 is a free event that is open to the public. 

Learn More

Rare Disease Documentary

Too Rare to Care, hopes to raise awareness that rare disease is a health crisis that people need to care about NOW. This film, on the diagnostic and cure odyssey of 5 rare disease families, will help mainstream audiences have a stronger understanding of rare disease. 

Watch the Too Rare to Care Movie Trailer

Find Community Events

National Organization for Rare Diseases (NORD) is hosting several events across the US from the end of February into early March. 

Check to see if there is one near you!