Tourettes Action — UK Tourette Syndrome Support Charity

Tourettes Action is the national support and research charity for people with Tourette syndrome in the UK, and for the parents, carers, teachers, employers and clinicians around them. Tourette syndrome involves involuntary sounds and movements — tics — and how schools, workplaces and the public respond to those tics shapes much of daily life. The charity's work reflects that: practical help and information for individuals and families, and training that changes how others understand tics.

It began in 1980, when a small group of parents of children with Tourette syndrome started meeting for mutual support, and it is now a registered charity (1003317) and company (2613993) run by a small staff team in Farnborough, Hampshire, with volunteers across the country. The first point of contact is a helpdesk offering information and advice by live chat and email on weekdays. Weekly online support groups run for adults with Tourette syndrome and for parents and caregivers, open to UK residents, alongside a network of volunteer-run face-to-face groups. Events include TICfest, TEENfest weekends for teenagers and weekends for adults.

For school, the charity produces a TS Passport for use in education settings, alongside school resources and advocacy. Identity cards let people who would rather not explain their tics aloud show a card instead, and TA Grants help people with Tourette syndrome access activities and equipment. Professionals — educators, healthcare staff and employers — can use webinars, training and eLearning modules, and there is published guidance on education, employment, benefits and life at different ages. Tourettes Action also funds research into Tourette syndrome and its diagnosis.