Rare Disease Day takes place on the last day of February each year.
The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
According to the Rare Disease Foundation a rare disease is defined as a condition affecting fewer than 1 in 2000 people. There are more than 7000 diagnosed rare diseases and many more undiagnosed diseases. About 1 in 12 people (nearly three million Canadians) have a rare disease. Most known rare disorders are severe and chronic, with many being degenerative and life threatening.
To join in raising awareness of CDKL5 disorder visit rarediseaseday.org
1. Share a photo of a loved one living with CDKL5 disorder.
2. Upload a video.
3. Write and share your story.
4. Post updates on Facebook and Twitter using hashtag #RareCDKL5disorder.
5. Change your profile picture to the rare disease logo.