CHARGE syndrome
CHARGE syndrome is a rare genetic disorder that affects different areas of your body.
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
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.
CHARGE Factsheet 1 Overview (428kb)
A print-ready PDF factsheet on a practitioner's viewpoint of CHARGE syndrome
CHARGE Factsheet 2 Collaboration (353kb)
A print-friendly PDF factsheet on collaborative working
CHARGE Factsheet 3 Major and minor diagnostic criteria (835kb)
A print-friendly PDF factsheet on the major and minor diagnostic criteria
CHARGE Factsheet 4 Genetics (456kb)
A print-ready PDF factsheet on genetics
CHARGE Factsheet 5 Endocrine issues (593kb)
A print-ready PDF factsheet on endocrine issues
CHARGE Factsheet 6 Anaesthesia issues (621kb)
A print-ready PDF factsheet on the risks of anaesthetics
CHARGE Factsheet 7 Audiology assessment (456kb)
A print-ready PDF factsheet on hearing and audiological assessment in CHARGE syndrome
CHARGE Factsheet 8 Cochlear implants (482kb)
A print-ready PDF factsheet on cochlear implants
CHARGE Factsheet 9 Assessment for vision (456kb)
A print-ready PDF factsheet on assessment of vision for children with CHARGE
CHARGE Factsheet 10 Visual behaviours (437kb)
A print-ready PDF factsheet on visual behaviours
CHARGE Factsheet 11 Sensory integration (513kb)
A print-ready PDF factsheet on sensory integration
CHARGE Factsheet 12 Communication (524kb)
A print-ready PDF factsheet on communication
CHARGE Factsheet 13 Eating and drinking issues (535kb)
A print-ready PDF factsheet on eating and drinking issues
CHARGE Factsheet 14 Patterns of early development (375kb)
A print-ready PDF factsheet on patterns of early development
CHARGE Factsheet 15 Early intervention (486kb)
A print-ready PDF factsheet on early intervention
CHARGE Factsheet 16 Education (307kb)
A print-ready PDF factsheet on educational needs and support
CHARGE Factsheet 17 Behaviour (463kb)
A print-ready PDF factsheet on behaviour
CHARGE Factsheet 18 Social and emotional development (520kb)
A print-ready PDF factsheet on social and emotional development
CHARGE Factsheet 19 Mental health (466kb)
A print-ready PDF factsheet on mental health issues
CHARGE Factsheet 20 Sleep difficulties (484kb)
A print-ready PDF factsheet on sleep difficulties
CHARGE Factsheet 21 Parent's perspective (404kb)
A print-ready PDF factsheet on a parent's perspective on CHARGE syndrome.
CHARGE Factsheet 22 Intervenor (471kb)
A print-ready PDF factsheet on the role of the intervenor
CHARGE Factsheet 23 Health visitors (437kb)
A print-ready PDF factsheet on guidance for health visitors
CHARGE Factsheet 24 GP (469kb)
A print-ready PDF factsheet on the role of the GP
CHARGE Factsheet 25 Occupational therapist (497kb)
A print-ready PDF factsheet on the role of occupational therapists
CHARGE Factsheet 26 Speech and language therapist (448kb)
A print-ready PDF factsheet on speech and language therapists
CHARGE Factsheet 27 Guidance (451kb)
A print-ready PDF factsheet on guidance for social workers
CHARGE Factsheet 28 Adulthood (461kb)
A print-ready PDF factsheet on CHARGE syndrome in adulthood
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