Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity and access to diagnosis and therapies for people living with a rare disease. It has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.
When is it observed?
Every year on 28 February (or 29 in leap years)—the rarest day of the year.
How did it start?
Rare Disease Day began in 2008 and was organized by EURORDIS and 65+ national alliance patient organization partners. It provides energy that enables rare disease advocacy work to progress on the local, national, and international level.
How can you participate in Rare Disease Day?
Though Rare Disease Day is patient-led, everyone, including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policy makers, industry representatives and the general public, can participate in raising awareness and taking action today for our community who require immediate and urgent attention.
Share your colours on social media by sharing experiences, stories, and quotes online and with friends and shining the light on people living with a rare disease, collectively we aim to change and improve lives of the 300 million people worldwide.
From the Rare Disease Day website