Rare Disease Day was started in the early 2000s with the goal of raising awareness of rare diseases around the world. While RDD is February 29th – because it’s also rare! – or the 28th on non-leap-years, the whole month of February is Rare Disease Month. Between Europe and the US, over 60 million people live with a rare disease.
This year’s theme is research.
Many rare diseases face a lack of specialists who even know about these diseases which means getting a diagnosis is really difficult. Additionally, a lack of effective treatments means that diseases can progress quickly, causing pain and all sorts of life-threatening issues.
When you take into account the above, it’s no surprise that cost becomes an issue as well. This makes even more sense when you learn that nearly 80% of rare diseases have a genetic cause.