Websites about CHARGE

www.chargesyndrome.org

An American website providing support to individuals and families affected by CHARGE syndrome. 

www.charge-syndrom.de

A German website providing support to individuals and families affected by CHARGE syndrome.

www.chargesyndrome.org.au

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

www.sense.org.uk

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.

www.deafblind.com

Contains information and links concerning deafblindness. This site stresses the importance of inclusive technology.

www.ndcs.org.uk

The National Deaf Children’s Society which provide information on all aspects of deafness.

www.rnid.org.uk

The Royal National Institute for Deaf People provides information on all aspects of deafness.

www.rnib.org.uk

The Royal National Institute for the Blind provides information on all aspects of sight loss.

Condition specific websites

www.support4scoliosis.co.uk

Providing help and support for those affected by scoliosis.

www.hydrosupport.org

An American website that provides support for parents of children with hydrocephalus.

www.babynose.org

Support group for families of babies born with choanal atresia.

www.clapa.com

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.

www.kidney.org.uk

The United Kingdoms kidney patient charity.

www.childrens-heart-fed.org.uk

Provides support and information about heart conditions, heart units etc.

www.magicfoundation.org

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.

www.tofs.org.uk

The national support group for children with tracheo-oesophageal fistula and oesophageal atresia

General disability websites

www.cafamily.org.uk

Contact a Family provides support and advice to parents whatever the medical condition of their child.

www.scope.org.uk

Scope is a charity that supports disabled people and their families.

www.mencap.org.uk

Provides support to parents, carers and people with a learning disability.

Latest News

Dr David Brown to give talk in Bristol

Dr David Brown to give talk in Bristol

Posted on Tuesday 2 May 2017

Dr David Brown comes to the SENSE centre in Bristol on 7th June to give a presentation entitled: CHARGE syndrome after 34 years - an overview with a focus on sensory issues, posture and movement, and …

SIGNtific

SIGNtific

Posted on Wednesday 15 February 2017

SIGNtific is a series of Deaf-led family events at the Science Museum with voiceover interpreters that take place on the first Saturday of every month and during the holidays. Suitable for Deaf and he…

Multi-level tree house brings smile to boy with CHARGE Syndrome

Multi-level tree house brings smile to boy with CHARGE Syndrome

Posted on Friday 16 September 2016

Tree house brings smile to boy with CHARGE syndrome

We Have Charge Video

We Have Charge Video

Posted on Monday 12 September 2016

A video posted by Claudia Junghans on VIMEO interviews people with CHARGE and explores their lives