Help for patients and carers

As the patient’s condition becomes more advanced, they will require more help and care and this can be challenging and exhausting for parents, relatives and carers. If you are struggling to cope, you should talk to somebody about getting additional help at home; you can discuss this with your GP or get in touch with social services, your local authority or a private home care service. If you want to talk to somebody about the syndrome, you need information or advice or you simply want to chat to someone who knows what you’re going through, contact the International Rett Syndrome Association.

Rett Syndrome

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