CHARGE Syndrome Awareness Day

8 August, 2025

The theme for this year is: STRONGER TOGETHER

For CHARGE Syndrome Awareness Day 2025, we’re joining hands around the world—literally and symbolically—to raise awareness of CHARGE syndrome, a rare and often misunderstood condition. Whether it’s a group hug, a paper people chain, or a virtual hi-five, it all counts. Together, we will show the world that no one faces CHARGE Syndrome alone.

CHARGE connect with a group hug

Connect with family and friends for a group hug. It could be two people or 20 people. You could include a pet, or a favourite toy. Add your country’s flag to show what country you come from. Not into hugging? Create a people chain. Or a paper one. Make a short one and spell out the word C-H-A-R-G-E.

How to get involved

It's so easy to join in!

1. Take a photo

2. Put your photo into the Awareness Day frame

3. Share your photo now or on 8. August on social media

4. Use these hashtags: #CHARGEconnect #CHARGEstrongertogether #CHARGEsyndromeawarenessday #chargesyndromeworldwide

How to download the photo frame?

Use this QR code to access CHARGE Syndrome Awareness Day assets. Open your phone camera and hold it up to the code. A link will appear on your phone screen. Follow the link which will take you to the assets stored in drop box. You don’t have to sign up for Drop box to download the files.

Follow on social media

📌 Follow our Facebook Page: CHARGE-Syndrome Awareness Day

📌 Follow our Facebook Group: @CHARGE-Syndrome Awareness Day - International Group

📌 Follow our Instagram Page: https://www.instagram.com/chargeawareness_day/

About the awareness day

CHARGE Syndrome Awareness Day is held internationally on 8 August. This marks the day the paper on the discovery of the CHD7 gene was published online by Professor Conny van Ravenswaaij-Arts (8 August 2004). 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.