Rare Disease DayFebruary 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.
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.
Rare Disease Legislative Advocates Resources
Interested in becoming a stronger advocate? Sign up to receive information about programs and services to help.
Virtual Activities & Events
Rare Disease Day at National Institutes of Health
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.
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