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Supporting people affected by Charcot-Marie-Tooth disease.

How We Help

Welcome to Charcot-Marie-Tooth UK’s website – we’re glad you’ve found your way to us!

Whether you are a regular caller, an existing member, someone who is thinking of becoming a member or Friend, or someone with symptoms undiagnosed and unrecognised, frustrated by the numerous doctors, nurses,  consultants, alternative therapists, friends and  family and so on, who cannot provide the answers you require or perhaps you have an inkling that CMT may be worth investigating – you’ve come to the right place.  No other organisation in the UK can provide you with the detailed information and knowledge that we can, much of it gleaned from personal experience.

Our experienced Information and Support Advisers, Kim and Yvonne, are your first port of call and are able to help, advise or just listen to you.  They are available from 9.30am to 1.30pm, Monday to Friday.  They can help signpost you to the right consultant, or send you information for a school, or for family, send you guides to claiming benefits and so much more.  Yvonne is an Occupational Therapist with many years of experience – so she’s a mine of useful information and support for you, and also has some training in counselling, and Kim has CMT herself, so they are really a fantastic resource for you.

The freephone number is 0300 323 6316 and is manned from 9.30am to 1.30pm five days per week.

We are a place to come and talk about how you’re feeling: physically, and in every other way.   You can discuss your children or perhaps there are other family members who may be having symptoms, and you need to discuss getting these recognised, or you may have CMT yourself – perhaps you’re newly diagnosed, and it’s all come as a bit of a shock.   We will endeavour to support you to improve your quality of life.  How do you get the right orthotics, for example, what is that pain and what can l do to alleviate it?  What is the right approach when seeing a consultant, your GP, your employer, that disability advisor.   What disability benefits am l entitled to?  What assessments do l need, how do l appeal?   Is the doctors prognosis correct?  What rights do l have at work, should l continue working?

CMT is a progressive, genetic disease which causes damage to the long peripheral nerves to the hands and feet.  It is not life threatening but can and does, affect your quality of life.  It  will affect your mobility and hand coordination to varying degrees of severity, will cause chronic fatigue and possibly long term pain.  It is estimated one in  2500 have this disease in the UK.

Your membership subscription will go towards providing this service, and much more.

  • Just £10 pays for one hour of our helpline
  • £20 pays for four packs of information for GPs or consultants
  • £50 pays for 25 copies of ComMenT, our regular magazine

Some of your fees will also go towards researching this inherited genetic disease. We also have a yearly conference, and at a discounted rate for paying members.

But if you can’t afford the subscription at the moment, you can opt to become a “Friend” of CMT UK – with option of becoming a full member whenever you can, or fundraise for your membership – that’s always an option.  Both options are available from the link below.

JOIN US NOW!

 

Listen to a podcast about CMT, talking about symptoms, management, benefits and lots more:

 

Watch this video with Tony, Jade and Lisa talking about CMT and how Charcot-Marie-Tooth UK helps:

 

And to join the E-Newsletter list – click here:

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