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About the Rett Syndrome
Association UK
We are a national organisation giving help,
advice and support to parents, carers, siblings and professionals, in fact
anybody involved with a child or adult who has Rett syndrome.
The aims of our Association are:
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To identify people with Rett syndrome |
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To offer practical help, friendship and support
to people with Rett syndrome, their families and other carers |
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To encourage enquiry into and disseminate
information about best practice in treatment and care |
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To promote greater understanding of Rett
syndrome amongst the general public and in particular amongst medical
professionals |
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To fund research into the cause and treatment
of Rett syndrome |
We provide the following services for parents,
carers, extended families and interested professionals:
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Development of centres for diagnosis and
management |
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Liaison with a multi-disciplinary team of
experts |
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Proactive support for families via our Support
Service Managers |
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Self-help support groups and a network of
contact supporters |
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Developing professional knowledge and expertise |
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Annual Family Weekend which gives information,
support and respite care |
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Family days offering mutual support and
information |
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Telephone support seven days a week |
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A wide range of accessible written and video
information |
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Quarterly magazine Rett News |
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Research funding to enable earlier diagnosis
and practical information for families |
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Working in partnership internationally
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