International CHARGE Syndrome Awareness Day
August 8 2025
This years theme is
STRONGER TOGETHER
Connecting CHARGE around the world
We’re joining hands around the world to raise awareness of CHARGE syndrome. Take a photo or create a video – whether it’s a group hug, a people chain, or a virtual hi-five, it all counts.
The goal is to show the world that no one faces CHARGE syndrome alone. Share your creation on our socials on August 8 and tag us.
Use the hashtags below:
#CHARGEconnect #CHARGEstrongertogether #CHARGEsyndromeawarenessday #CHARGEsyndromeworldwide
Let’s celebrate the efforts of our community worldwide to show that no one faces CHARGE Syndrome alone.
Download the leaflet: Brasil, Deutsch, Nederlands, French, Japanese, Italian.
Contact:
Claudia Junghans: SHOW EMAIL
Madelene Rich: SHOW EMAIL
About CHARGE Syndrome Awareness day
CHARGE Syndrome Awareness Day is held internationally on August 8. This marks the day the paper on the discovery of the CHD7 gene was published online by Professor Conny van Ravenswaaij-Arts (August 8, 2004[1]). The awareness day aims to raise awareness of the variability of CHARGE syndrome to help improve diagnosis and access to best practice interventions.
About CHARGE syndrome
CHARGE syndrome is a rare (1:10,000), complex genetic disorder causing multiple birth defects and sensory deficits. It presents in a variety of ways with a wide spectrum of medical, physical, and psychological issues. Nearly all have dual sensory loss (80-95% are deafblind) and vestibular dysfunction (missing semi-circular canals) affecting balance and processing of both visual and auditory information, dramatically interfering with development of motor skills, communication, and language milestones.
The clinical diagnostic criteria C-H-A-R-G-E was first described in 1981 but is no longer used for diagnosis. The criteria has undergone several changes since then (1998, 2005, 2016) to include an expanded list of major and minor features for clinical diagnosis. While the variant in CHD7 gene was discovered in 2004, a diagnosis of CHARGE syndrome remains clinical with genetic testing being used in borderline cases. However, due to the variability of how CHARGE syndrome presents there can be delays in diagnosis and appropriate interventions.
[1] Vissers LE, van Ravenswaaij CM, Admiraal R, et al. Mutations in a new member of the chromodomain gene family cause CHARGE syndrome. Nat Genet. 2004;36(9):955-957. doi:10.1038/ng1407