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 Monday to Friday from 10:00 to 16:00 to both members and non-members and to healthcare professionals.

Helpline number: 0845 458 6322 or 020 7793 3650

To email the Helpline, click here:

Both the email and helpline service are operated under a confidentiality policy. 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

Although the Helpline is open five days a week, it is a small service and at busy times it will 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.