Rare Disease Day takes place annually on February 28 (or February 29 in leap years—the rarest day of all).
Established by EURORDIS in collaboration with over 65 national patient advocacy groups, this global movement shines a light on the challenges faced by people living with rare diseases. It serves as a powerful platform to drive awareness, influence policy, and strengthen advocacy efforts at local, national, and international levels.
Rare Disease Day is led by patients but invites everyone—individuals, families, caregivers, healthcare professionals, researchers, clinicians, policymakers, industry representatives, and the public—to raise awareness and take action for this vulnerable community in urgent need of support.
By sharing your colours on social media, illuminating buildings and monuments, hosting events, and advocating to policymakers, we can collectively shine a light on those living with rare diseases. Together, we can drive change and improve the lives of 300 million people worldwide.
70% genetic rare diseases start at childhood
Rare cancers affect fewer than 6 people per 100,000 each year
As we come together to raise awareness and support the rare disease community, why not take part in a local event?
Hear from the rare community
Stories from Genetic Alliance UK
Genetic Alliance UK is an alliance of over 200 charities and support groups working together to improve the lives of people in the UK with genetic, rare and undiagnosed conditions.
Stories from rarediseaseday.org
Raising awareness for patients, families and carers around the world that are affected by rare diseases.
