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Supporting people affected by Charcot-Marie-Tooth disease.


carersIf you are caring for someone with a disability or illness you may be able to get some support and help in your own right. This could include benefits, information, money towards a holiday, general support or even a trained carer to help you out or give you a break.

Some of the state benefits that are available to people with CMT or their carers include:

  • Carers Allowance – may be available to you if are you looking after someone who is severely disabled, a disabled child or an elderly person
  • Council Tax Reduction – some carers and disabled people can get reductions in Council Tax depending on their level of income
  • Personal Independence Payment – this has replaced the Disability Living Allowance for new adult applicants
  • Disability Living Allowance – may be available for a child who has difficulties walking or needs more looking after than a child of the same age who doesn’t have a disability

You can find out more about benefits and how to claim them at www.gov.uk.

If you are a Carer

For guidance and advice on a wide range of things to consider if you are a carer, go to Carers UK. The website has information on your legal rights under the latest legislation, benefits, assessments and much more. They also provide peer support for carers and campaign to improve the lives of carers.

Parents as carers

Parents may also come under the category of ‘carer’. Being a parent of a child with CMT can be challenging, particularly if you have CMT yourself. You may have concerns about the progression of your child’s disability or you may be worried about how your child is going to get on in school.

There are networks of parents who can offer support, advice and, in some cases, grants. Disabled Parents Network and Contact a Family can be particularly helpful.

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