Rare Disease Day
February 28On 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
ASF and FAST are attending Rare Disease Week on Capitol Hill
February 25 – 28
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.
ASF and FAST are attending in person with advocates from the Angelman community.
Learn more about attending 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
Other Activities & Events
Find Community Events
National Organization for Rare Diseases (NORD) is hosting several events across the US from the end of February into early March.
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