Parents and carers


If you would like hard copies of any of the information below, call our helpline on 0845 458 6322.

Information for parents and carers

  • Carers and dystonia. Gives information about the types of care people with dystonia may require and "Golden rules" that can help carers cope.
  • Caring for a child with dystonia. Answers questions many parents and carers commonly have when the child they care for is diagnosed with dystonia.

Useful Resources

Good Practice Guides for Professionals

  • Dystonia: A Guide to Good Practice. Our Guide to Good Practice contains extensive sections on the early-onset (childhood) dystonia, its diagnosis and treatment, additional support necessary and its social impact on children, parents and carers. If you would like the professionals who care for your child to have a hard copy call our helpline on 0845 458 6322.  
  • Information to give to schools regarding children with dystonia. This webpage and factsheet contain information for teachers and Special Educational Needs Coordinators (SENCOs) on good practice supporting children in schools.

2010 Children's Conference

Click here for a report on the conference.



In October, the Society held a conference for parents and carers of youngsters with dystonia. Staged at the Wellcome Centre in London, the eighty people who attended were treated to a varied day that include d presentations from leading clinicians and key support organisations as well as candid reports from parents.