[1 month, 1 rare disease, 1 organization] Charcot Marie Tooth

Every month, BlueDil focus on a different rare and severe disease.


  • Charcot-Marie-Tooth, what is it?

Charcot-Marie-Tooth (CMT) disease, from the names of its three discoverers, is a rare and little-known neuropathy. However, it is estimated that 30,000 to 50,000 people are affected in France, making CMT the most common rare disease!

Of genetic origin, CMT affects the peripheral nerves. These nerves connect the spinal cord to muscles and sensory organs to transmit messages from the brain to the different limbs. This information is motor when it concerns movement or sensory when it concerns the perception of touch and pain; the combination of this information also helps to maintain balance.

Charcot-Marie-Tooth disease affects between 1 person/1,200 and 1 person/2,500.

In the WCL, it is often referred to as an « invisible handicap » because the difficulties are sometimes little perceptible or underestimated. The number and degree of severity of symptoms also vary greatly from one person to another. Understanding the CMT is thus made more difficult for the patient’s family and friends, as well as the establishment of the diagnosis for health professionals.


  • What treatment?

To date, there is no curative treatment for CMT, but research is advancing. Patients can improve their quality of life through multidisciplinary care: use of devices (orthoses, lifts, etc.), physiotherapy and self-rehabilitation sessions, adapted physical activity, psychological follow-up, technical aids, etc.


  • A word from the President

« Our association CMT-France is celebrating its 30th anniversary this year, managed by patients or parents of patients, with its 2,000 members, it provides information, help and support. Raising awareness among the public but also among doctors is essential. Charcot-Marie-Tooth disease, a degenerative peripheral neuropathy, is rare, genetic and hereditary and unfortunately very little known, yet there are nearly 40,000 patients in France. Thank you for giving us this visibility. »

Martine Libany, President of CMT-France


To know more on CMT-France

Discover more about CMT with the 4e awareness campaign