Today is CHARGE Syndrome Awareness Day! This day officially marks 20 years since prof. dr. Conny van Ravenswaaij published her paper on the discovery of the CHD7 gen, causing CHARGE Syndrome.
The perfect opportunity to raise awareness of this syndrome!
Worldwide, CHARGE syndrome is the leading cause of congenital deafblindness. In fact, people with CHARGE syndrome are multi-sensory impaired. Not ‘only’ being visual and auditory impaired, but also having problems with their balance, smell, proprioceptive and interoceptive senses. This can highly impact development and wellbeing. However, persons with CHARGE are true masters in overcoming those challenges, each in their own unique way.
Today’s Awareness Day illustrates the uniqueness of CHARGE syndrome, in the different ways to ‘spell’
C-H-A-R-G-E.
The DbI CHARGE Network is an global network of experts by experience, family members, professionals and researchers interested in CHARGE Syndrome. We are very proud to contribute globally on this Awareness Day. Please feel free to share and be creative yourself!
You can find more information about it on the CHARGE Network page.
Interested in being a member of the DbI CHARGE Network?