Rare Disease Day – 28 February 2019
What is Rare Disease Day?
The main objective of Rare Disease Day is to raise awareness among the public and decision makers about rare diseases, and the impact that they have on patients lives. It was launched on 29th February 2008 (a ‘rare’ date) and it has been celebrated on the last day of February ever since. It is a day full of events all aimed at raising the profile of rare diseases – all aimed at raising their profile to increase the likelihood of improving treatment, making a diagnosis or ideally, finding a cure.
Why is Rare Disease Day Important?
Raising the profile of rare diseases is important, as one in twenty of us will live with a rare disease at some point in our lives, even more will be affected by living with, or knowing someone with a condition. Despite this, many diseases go undiagnosed, and the majority have no cure. The informed we are about rare diseases, the better able we are placed to benefit from treatments that are available, should we be diagnosed. The higher the profile of the disease, the more likely it is to receive funding for research into treatment, which could really improve patients’ quality of life.
Who can get involved?
Absolutely anyone can get involved in Rare Disease Day, check on the link below for events in your area – although it started off in Europe, it is now recognised right round the world.
You can paint your face with brightly coloured paint, and upload it to social media using the hashtags #ShowYourRare (yes that spelling is correct btw) and #RareDiseaseDay
For more information or to find out what is going on near you check out the official campaign website