What is Rare Disease Day?
Rare Disease Day is a globally coordinated movement dedicated to rare diseases, striving for equity in social opportunities, healthcare, and access to diagnosis and therapies for people living with a rare disease.
Since its creation in 2008, Rare Disease Day has played a crucial role in building an international rare disease community—multi-disease, global, and diverse, yet united in purpose.
Rare Disease Day is observed every year on 28 February (or 29 February in leap years—the rarest day of the year). It was established and is coordinated by EURORDIS in partnership with over 70 national alliance patient organisations. The day serves as a powerful focal point, driving advocacy efforts at local, national, and international levels.
Though Rare Disease Day is patient-led, everyone—including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policymakers, industry representatives, and the general public—can participate in raising awareness and taking action for this vulnerable population in urgent need of attention.
By spreading the word on social media, organising events, illuminating buildings, monuments, and homes, sharing experiences online and with friends, calling on policymakers, and shining a light on people living with a rare disease, we collectively aim to change and improve the lives of 300 million people worldwide.
This website helps patient organisations, advocates, and others campaigning for equity in rare diseases to access resources and promote campaign events.