This is not an exhaustive directory, but should provide you with a good starting point to find the information and support you’re looking for. If you have any suggestions for other organisations that ought to be added, let us know
All organisations have been sorted by area of interest/subject to make it easier to find the help you require. In most cases, we’ve provided both web and postal addresses, along with phone numbers if appropriate.
Please be advised that Charcot-Marie-Tooth UK does not endorse or recommend any of the organisations listed within these pages and we are not responsible for any content of external websites. If you find a broken link, please let us know.
Clos-o-mat toilets, to help keeping dignity
The College of Occupational Therapists provide leaflets that explain how occupational therapy can help you or someone you know get the most from life despite accident, illness (or something like CMT) or aging.
And for advice about stairlifts, go to http://www.stairliftsreviews.co.uk
Further advice on stairlifts can be found at www.stairliftexperts.co.uk/blog
To find the form that you need to complete in order to advise the DVLA of your CMT (failure to do so could result in a £1000 fine) – go here
Disabled Persons Railcard 1/3 off for you and a friend
Rica – produce independent, impartial guides to pretty much every major purchase and gadget that you may require, and detailed reports and reviews on all kinds of driving adaption.
The Essential Guide to Travelling with a Medical Condition –
With regards to orthotics, and despite the difficulties you might have in getting suitable orthotics from your local hospital, we do recommend that you persist with getting them supplied via the NHS. These websites are for information only and might help you point your orthotist into the right direction!
Vivomed (distributing the excellent “Push” braces, such as the Push Aequi brace)
Talarmade – makers of the new Turbomed 3000
The proverbial nightmare for CMTers – if you have any suggestions, we’d be delighted to hear them! We’re not suggesting that these shoes are particularly CMT-friendly, just that other members have tried them and liked them. Some of them are “orthotic friendly” as shoes for orthotics need to be deeper, wider and generally larger than your usual shoes. And none of these shoes are cheap, I’m afraid….
Shoemed – this is a specialist shoe-shop in Stratford upon Avon, but they are happy to provide advice by phone or even make home visits.
Clarks odd shoe service. This service is currently offered in selected Clarks stores. To check which ranges and services are available in your local store, use the Store Locator or contact Customer Care on 01458 899901 for further information. www.clarks.co.uk
Taylor Made Shoes – hand made shoes and boots
Chartered Society of Physiotherapists – mainly a professional body, but some limited information for the general public. They can help you find a private physio in your area.
Muscular Dystrophy UK – provides practical, medical and advocacy services. Also has a grant giving arm which can help with major items of equipment
Patient.co.uk – is an online resource encompassing pretty much every health condition you can think of, including conditions, support groups, and lots more
Pain Concern – information and support for people who suffer from pain.
Pain Toolkit – a great website advocating self-help for people with persistent pain.
Institute of Chiropodists and Podiatrists – has some general information for the general public on good foot care and orthoses on its website and can help you find a private chiropodist in your area.
British Orthopaedic Foot Ankle Society – has a section to help you find a specialist foot/ankle surgeon
The Reynauds and Scheroderma webiste has a useful product page to help keep your feet and hands warm.
Buy grippers for your shoes for when it’s icy or slipper from Amazon
www.swimming.org/poolfinder – to find a pool that may have good accessibility
Buy pool shoes from Amazon or elsewhere to help you feel more confident walking in and around the pool.
Genetic Alliance UK – lots of information about genetics, NHS genetics services and genetic ante-natal options including pre-implantation genetic diagnosis.
Carers UK – an organization giving support and information for people in a caring role
Contact a Family – Lots of information and advice on benefits, educational issues and much more.
Disabled Parents Network – support and information for parents who are also disabled
Scope – no longer just for people with Cerebral Palsy, there is a huge amount of information here for all. Also now run the DIAL network, who offer advice and help on a wide range of issues.
Benefits and Work – a news and information company producing highly accurate and detailed guides to applying for various disability benefits.
Household Quotes website has a very informative guide to all UK Benefits
Disability Rights UK – for information on benefits and your rights you can’t get much better than Disability Rights UK . They also publish the ‘Disability Rights Handbook’ referred to as the ‘bible’ for disability issues.
Gov.uk – the website that brings together all the government services into one place.
Citizens Advice Bureaux – with a network of local offices throughout the UK this is one of the best places to find out what is available to you in your local area.
Equality Advisory and Support Service – now taken over the helpline services from the Equality and Human Rights Commission
Money Advice Service – gives impartial advice on benefits, support for carers and other financial help.
Neurological Alliance – an umbrella group for all organisations representing people with neurological conditions, and involved with campaigning for better services
Turn2us – helps people access the money available to them through benefits, grants and other financial help
A-Z of Advice – Link takes you to the Citizens Advice Support Services’ A-Z of Advice.
Personal Independence Payment – Your Local Citizen Advice can help you with completing the Personal Independent Payment
Step Change Debt Charity – Provides the UK with comprehensive Debt Advice.
Scope – About Disability – A Registered Charity to help disabled people have the same opportunities as everyone else
ACAS – Provides information, advice, training, conciliation and other services for employers and employees to help prevent or resolve workplace problems.
DisabledGo provides detailed online access guides to a huge range of places that you will want to visit including shops, pubs, cinemas, restaurants, hotels and more.
CEA Card allows you to obtain ONE free ticket for the person who is accompanying you to enable you to visit the cinema, by providing the assistance you require as a result of your disability, provided you purchase an applicable full price ticket for yourself for the same performance of the same film in the same auditorium. The free ticket is provided on the assumption that the person who accompanies you is able to provide you with appropriate assistance.
Gov.UK – Home Page – Information on government services and information.
Need to talk – including Self Help.
Samaritans – Offers a safe place to talk any time you like, in your own way.
Mind – Mental Health Charity providing advice, support to empower anyone experiencing a mental health problem.
Talking Space Plus – Oxfordshire Health – You can self refer for help and support if you are struggling with depression and anxiety. They help to provide psychological therapies.
Moodgym – Self-help book – An interactive self-help book which helps you to learn and practice skills to help prevent and manage symptoms of depression and anxiety.
Living Life – covering low mood and stress – E-Therapy programme for stress, anxiety and depression
(We do not endorse one Insurance company over another.)
Organisations that we are a member of