CMT UKCharcot Marie Tooth International United Kingdom
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The charity CMT UK is raising awareness of the disorder throughout the month of September.
CMT UK's chief operating officer, Karen Butcher said: "As a charity supporting people with CMT, it is our role to speak up on their behalf and help them with the challenges they face.
Karen Butcher of CMT UK said: "We want to support people with CMT, who could be trying to deal with the condition on their own.
There's currently no cure but CMT UK is fundraising and campaigning for continuing research, in the hope of improving understanding and potential treatments.
For CMT UK, one of its key aims is to help ensure those affected don't suffer in silence.
Connecting with CMT UK has been a huge help to Emily, and hundreds like her, making living with the condition less alienating.
Karen Butcher, who runs CMT UK, says the lack of knowledge about the illness is frustrating.
Trustee at CMT UK, Karen Butcher, says "CMT affects some 23,000 people in the UK and yet not many people have heard of it or know its symptoms because it is rarely spoken about.