Rare Disease Day takes place on February 28th. The main objective of Rare Disease Day is to raise awareness amongst the general public, decision-makers, industry representatives, researchers, health professionals about rare diseases and their impact on patients' lives.
Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed.
The 300 million people living with a rare disease around the world and their families face common challenges in their daily lives. There are over 6000 rare diseases that are chronic, progressive, degenerative, disabling and frequently life threatening. Due to the rarity of each individual disease and scattered populations, expertise and information is scarce. In health and support systems designed for common diseases people living with a rare disease face inequities in accessing diagnosis, care and treatments.
Key statistics of rare diseases