Sometimes it is helpful to talk to someone who understands: not only about the condition, but how you may be feeling. Our telephone Helpline is available from Monday to Thursday from 9am to 5pm to both members and non-members and to healthcare professionals.

Helpline number: 020 7793 3650

Helpline email: [email protected]

The Dystonia Society operates a confidentiality policy to ensure information provided to us will be used solely for the purpose for which it is given and be kept confidential within the organisation. However, the Society may disclose information to the appropriate authorities without permission where it has a reasonable belief that there is concern that the health and safety or welfare of an individual is at risk. Click here to see our confidentiality policy. 

This service should not be used for emergencies.

Please note that our Helpline staff are not medically qualified and that the Helpline cannot offer advice about an individual’s treatment or provide any type of diagnosis. The service can however provide support and information on many aspects of dystonia and its management

Our Helpline is currently open four days a week. However, it is a small service and at busy times it may not be not possible to answer calls in person. If you get an answerphone please leave a message with your name and telephone number - a member of the Helpline team will get back to you when they are able to.