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Useful resources

Useful resources for families of children and adults with Rett Syndrome

Rett Syndrome specific downloadable resources

Gastro-intestinal disorders in Rett syndrome: Checklist for clinicians on assessment and management Guidelines produced by the Telethon Institute for Child Health Research, Australia.

Growth and nutrition in Rett syndrome: Checklist for clinicians on assessment and management Guidelines produced by the Telethon Institute for Child Health Research, Australia.

Scoliosis in Rett Syndrome :A collaboration between parents, clinicians and researchers Guidelines produced by the Telethon Institute for Child Health Research, Australia.
 

Clinical Guidelines

NICE Clinical Guidelines for Constipation in children and young people

 

Support

Rett UK offer professional family support services for families of people with Rett Syndrome. They have a dedicated helpline: 01582 798 911 or you can email them on support@rettuk.org

Cerebra provides direct support to children with brain related conditions and their carers. Help includes sleep service, custom made equipment, grants, holiday home and a stress helpline (freephone): 0800 328 1159 or email: info@cerebra.org.uk

 

Benefits

Contact a family provide information about benefits, tax credits, short breaks and more for UK families of children with disabilities.

 

Education

IPSEA provides free legally based advice on Special Educational Needs (SEN)/disability in the UK including model letters for common problems.

 

These are just a few of the many resources available. If you have a resource you can't live without that you think we should share, please email us.