What is CHARGE Syndrome?
CHARGE syndrome is a recognisable (genetic) pattern of birth defects which occurs in about one in every 9,000 to 10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family.
Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years.
Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations. One of the hidden features of CHARGE syndrome is the determination and strong character these children display.
The CHARGE Association
The CHARGE Syndrome Association of Australasia Ltd has a vision to improved quality of life for children and adults with CHARGE syndrome.
The Association’s objectives include investing in medical research, offering family support, hosting conferences, seminars & workshops, raising public awareness, advocacy and being a contact point for people and families in need.
The CHARGE Association receives no recurrent government funding and is reliant on donations and fund raising to maintain the provision of services to families and professionals.