Rare Disease Day is observed annually on the last day of February to raise awareness for the 300 million people worldwide living with a rare disease, their families, and carers. The day aims to improve the lives of those living with rare diseases by promoting equity in social opportunity, healthcare, and access to diagnosis and therapies.
When is Rare Disease Day Observed?
Rare Disease Day is an awareness initiative held annually on February 28 or February 29 in Leap Years, emphasizing the rarity of these dates to highlight the significance of rare diseases and draw public focus to them as a public health issue.
How will you you support on Rare Disease Day this year?
— Rare Disease Day (@rarediseaseday) February 27, 2025
Sharing a personal story, joining an event, or simply starting a conversation, every action is a step closer to equity for the 300 million people living with rare diseases.
Find out more: https://t.co/AUKfGZJLJB pic.twitter.com/gc8Ru54AmK
History of Rare Disease Day
The first Rare Disease Day was celebrated in 2008 by the European Organization for Rare Diseases (EURORDIS). Since then, it has become a global event, with thousands of events taking place in over 100 countries, reaching hundreds of thousands of people and resulting in significant media coverage.
Significance of Rare Disease Day
Rare diseases affect a small percentage of the population, but the total number of people affected is significant, with approximately 300 million people worldwide living with a rare disease. Rare Disease Day seeks to raise awareness about the challenges faced by people living with rare diseases, including delayed diagnosis, limited treatment options, and social isolation.
Did you know that, while individual #RareDiseases impact small numbers of people, there are so many types that, overall, having a #RareDisease isn't a rare experience? Rare is everywhere!
— NORD (@RareDiseases) February 26, 2025
NORD is making #RareDiseaseDay visible—get more facts and help spread awareness using… pic.twitter.com/tofjkqP4xs
Theme of Rare Disease Day 2025
The theme for Rare Disease Day 2025 is "More than you can imagine; an anthology of rare experiences". The day is a global call to raise awareness of the challenges faced by people living with rare diseases.
Why Do We Observe Rare Disease Day?
Rare Disease Day is crucial for raising awareness about the unique experiences of those with rare diseases, advocating for improved support systems, and exploring new research and treatments. It aims to promote equity in healthcare and access to diagnoses and therapies.
How To Celebrate Rare Disease Day?
To participate, individuals can light up landmarks, wear stripes and post on social media with #ShowYourStripes and #RareDiseaseDay, engage local institutions, and support advocacy organizations that inform policymakers about the needs of rare disease patients.