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.
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.