CHARGE syndrome

CHARGE syndrome is a rare genetic disorder that affects different areas of your body.

The name CHARGE is an abbreviation for several of the features common in the disorder: coloboma (an eye condition), heart defects, atresia choanae (a problem behind the nose), growth retardation, genital abnormalities, and ear abnormalities.

The severity of the condition varies from person to person.

It’s believed that, in 50% of children with CHARGE, the condition is due to a gene mutation.

Although CHARGE is a complicated condition, Sense knows many children and adults who, with the right support, have been able to overcome the barriers they faced and lead full and meaningful lives.

The CHARGE Family Support Group is run by parents of people with CHARGE and is a great source of information and support

The Charge Information Pack for Practitioners

Sense has created a comprehensive information pack about the many aspects of living with CHARGE syndrome.

These have been written by some of the leading specialists in the field, including paediatricians, teachers, psychologists and social workers.

Although titled as being for practitioners, this resource is also aimed at parents of children and young people with CHARGE who want to learn more about their child’s condition.

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