CHARGE Syndrome Awareness Day

International CHARGE Syndrome Awareness Day

August 8 2026

This years theme is
CHARGE syndrome – how do you spell it?

CHARGE is rare – but on August 8, it’s everywhere.

Get ready for the 3rd International CHARGE Syndrome Awareness Day! This year’s theme is “CHARGE syndrome – how do you spell it?”

Show the incredible variability of CHARGE syndrome around the world by spelling out the letters C-H-A-R-G-E using items that reflect your life, culture, or country.

You can use anything meaningful or fun:

  • Pens, socks, toy cars, local foods, traditional crafts, or everyday objects from home.

You can also:

  • Use a landmark as your backdrop
  • Include your national flag
  • Show us something unique about the country you live in

Follow here, keep up to date, and find more information at the website: https://chargesyndrome.day/. You can also view the file CHARGE Syndrome Awareness Day 2026 Announcement.jpg for visual examples.

Download the file:

Japanese | Italian | German | Portuguese | Dutch | English | French

Use the hashtags below: 
#CHARGEconnect #CHARGEstrongertogether #CHARGEsyndromeawarenessday #CHARGEsyndromeworldwide


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