We have just over a week until February 28th, which is Rare Disease Day! In the US, a rare disease is defined as one that affects a minor population of less than 200,000 people. Sickle cell disease falls under the collective umbrella of Rare Diseases, so its another great opportunity to spread the word, break the silence, and make an impact about the plight of those suffering from rare diseases like SCD.
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 un or mis-diagnosed. 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 first Rare Disease Day was celebrated in 2008 on 29 February, a ‘rare’ date that happens only once every four years. Ever since then, Rare Disease Day has taken place on the last day of February, a month known for having a ‘rare’ number of days.
On www.rarediseaseday.org you can find information about the thousands of events happening around the world on the last day of February.
You can also join in the fun–it’s simple!
1. Paint your face using brightly colored face paints
2. Pose for a selfie or group photo
3. Post the picture on social media using the hashtags #ShowYourRare and #RareDiseaseDay , for SCD you can also include #SickleCell #ConquerSCD #SickleCellWarrior #SickleCellAwareness
Share an image on your own or with your friends, family or colleagues!