Websites about CHARGE
www.chargesyndrome.org
An American website providing support to individuals and families affected by CHARGE syndrome.
A German website providing support to individuals and families affected by CHARGE syndrome.
An Australasian group providing support to individuals and families affected by CHARGE syndrome
www.chsbs.cmich.edu/timothy_hartshorne
Tim Hartshorne is a Doctor of Educational Psychology and father of a boy with CHARGE. The site contains many papers on the behavioural aspects of CHARGE.
uk.groups.yahoo.com/group/ukchargesupport
The United Kingdom forum for individuals and families affected by CHARGE.
Websites about sensory loss
The world’s largest organisation working with and campaigning for deafblind people, their families and professionals who work with them. Sense produce an array of leaflets including one specifically related to CHARGE.
Contains information and links concerning deafblindness. This site stresses the importance of inclusive technology.
The National Deaf Children’s Society which provide information on all aspects of deafness.
The Royal National Institute for Deaf People provides information on all aspects of deafness.
The Royal National Institute for the Blind provides information on all aspects of sight loss.
Condition specific websites
Providing help and support for those affected by scoliosis.
An American website that provides support for parents of children with hydrocephalus.
Support group for families of babies born with choanal atresia.
The representative organisation for all people with and affected by cleft lip and/or palate in the UK.
www.macs.org.uk A site about sight impairments including colobomas.
The United Kingdoms kidney patient charity.
www.childrens-heart-fed.org.uk
Provides support and information about heart conditions, heart units etc.
Major Aspects of Growth In Children (MAGIC) is a charity for children (and affected adults) have growth hormone deficiency or other medical conditions which affect their growth.
The national support group for children with tracheo-oesophageal fistula and oesophageal atresia
General disability websites
Contact a Family provides support and advice to parents whatever the medical condition of their child.
Scope is a charity that supports disabled people and their families.
Provides support to parents, carers and people with a learning disability.
