About the day
The international day of Crigler-Najjar, named “Crigler-Najjar Day” was created and launched by the French Crigler-Najjar Association (AFCN) in 2017.
It is celebrated every year on June 21st.
What is Crigler-Najjar syndrome?
It is a rare and extremely serious genetic disease (less than 1 in 1 million births). It is due to the deficiency of a liver enzyme, which causes a very intense permanent jaundice and which obliges people who suffer from it to undergo daily phototherapy sessions of 10 to 12 hours a day, every day, in order to stay alive.
For more information on the disease and the progression of the research:
Why this day?
To raise awareness of the general public and the medical world on this rare disease and also to enable isolated patients around the world, to feel less alone and to make their voice heard through social networks and also through local events in yellow and blue, organized in the different countries .
Why yellow and blue colors?
YELLOW is the color of the skin and eyes of Crigler-Najjar patients, of the sun which is good for them, and it is also the color of the sunflower, the symbol flower of the Crigler-Najjar patients, because like the sunflowers, they also always turn towards light, whether natural (sun) or artificial (phototherapy).
BLUE is the color of light that keeps them alive.
Why June 21?
June 21st is for Crigler-Najjar patients a symbolic day: it is the longest day of the year so with the longest duration of light, light essential to the life of our children.