Rare Disease Day

Rare Disease Day is a global movement aimed at improving social opportunities, healthcare, and access to diagnosis and therapies for those living with rare diseases. It raises awareness for the 300 million people worldwide affected by rare conditions like Niemann-Pick disease, as well as their families and caregivers. The event encourages people to get involved and raise awareness about what it means to be rare.

Held annually on the last day of February, Rare Disease Day is founded by EURORDIS and sponsored by the National Organization for Rare Diseases (NORD). With 1 in 20 people affected by a rare disease in their lifetime and no cure for many, the day is crucial in improving public knowledge and urging researchers and policymakers to address the needs of rare disease patients. Anyone can get involved in Rare Disease Day awareness. Participants can find additional helpful resources, activities and events to get involved at rarediseaseday.org.