Rare Disease Day

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. 

CDKL5 disorder is a rare disease with fewer than 1000 diagnosed cases worldwide - awareness is desperately needed.

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.