Today is a special day to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients lives.
Unlike more well-known diseases such as cancer, when you do get diagnosed with a rare disease it can be very isolating and difficult to get support. This ultimately affects your mental health.
It is known that 1 in 20 people will live with a rare disease at some point. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.
The campaign started as a European event and has progressively become a world phenomenon. The first Rare Disease Day was celebrated in 2008 on 29 February, a ‘rare’ date that happens only once every four years. Ever since, Rare Disease Day has taken place on the last day of February, a month known for having a ‘rare’ number of days.