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What is Tourettes Action?
Tourettes Action is a UK charity focused on Tourette syndrome (TS). It combines direct support for people with TS and their families with research funding, training and awareness work. Its stated aim is to improve the lives of people living with TS, and it serves both individuals and the professionals around them.
What it offers
- Support services: a helpdesk, online live chat and email support, plus online and in-person support groups.
- Information: explanations of what TS is, symptoms and co-occurring conditions, causes, diagnosis and management options, and a frequently asked questions section.
- Practical help: guidance on education, employment and benefits, plus tools such as a TS Passport and ID cards, and grants.
- Community: events and weekends for young people and adults, an online community, blogs and awards.
- Training: sessions for employers, health and social care staff, and education professionals, including workplace neurodiversity training.
- Research: funding for projects and summaries of current and previous research.
Who it is for
A parent whose child has just been diagnosed might start with the diagnosis and education sections, then join a support group. An adult with TS may be more interested in employment guidance, benefits information or the adult weekends. A teacher, employer or clinician would go to the training pages. Someone who wants to contribute could look at fundraising, volunteering or the shop.
How it compares to other routes
| Route | Best for | Trade-off |
|---|---|---|
| Tourettes Action | UK-focused support, training and community | Charity information, not a substitute for clinical care |
| NHS services | Diagnosis and medical treatment | Waiting times vary; limited ongoing peer support |
| General health sites | Broad symptom overviews | Less TS-specific practical and benefits guidance |
For clinical questions about diagnosis or medication, a specialist clinician remains the right first stop; the charity's material is best used alongside that care. A sensible next step is to browse the "Find support" section and, if you are a professional, the training pages. Related organisations include NHS for clinical information and YoungMinds for young people's mental health.
How do I get help or support for Tourette syndrome from Tourettes Action?
Tourettes Action offers several routes to help, and the right one depends on whether you need urgent answers, ongoing contact with other people who have TS, or practical information to take to school, work or a clinician.
Direct support
- Helpdesk. The charity runs a helpdesk reachable by email and live chat, which is the most direct way to ask questions about TS, diagnosis, benefits, education or local services. Use it when you have a specific query and want a reply from someone who knows the condition.
- Online support groups. These are run remotely, so they suit people who cannot travel or who prefer to stay anonymous at first. They connect you with other people with TS, parents and carers.
- In-person support groups. These meet locally and are better for people who want face-to-face contact and a regular social anchor. The site also lists new groups, so it is worth checking if one has started near you.
Information you can use
The website has a substantial information section covering what TS is, symptoms, co-occurring conditions, causes, diagnosis and management. Management pages include behavioural therapies, medication, telemedicine, other approaches, neurosurgery and peripheral nerve stimulation. There is also an eLearning section and a set of FAQs, which are useful if you want to understand the basics before contacting anyone.
For school and work, there are dedicated sections for parents, carers and students, plus guidance on SEND law, employment and benefits. The TS Passport and TA ID cards are practical tools for explaining the condition to teachers, employers or staff who may not know much about it.
Practical next step
Start with the helpdesk if your question is specific, or join an online support group if you mainly want to talk to people in the same situation. If you are a parent or a young person, look at the education and young people sections first, then use the helpdesk for anything the pages do not answer.
Choosing between options
| Need | Best route |
|---|---|
| A specific answer about diagnosis, benefits or services | Helpdesk (email or live chat) |
| Meeting other people with TS | Online or in-person support group |
| Understanding TS from scratch | Information pages, FAQs, eLearning |
| Explaining TS at school or work | TS Passport, TA ID cards, education and employment sections |
| Training for a workplace or school | Training and webinar programme |
Tourettes Action is a charity rather than a clinical service, so it does not diagnose or prescribe. For medical decisions, use its information to prepare questions and then speak to your GP, neurologist or specialist. Similar national organisations exist elsewhere, such as NHS for UK health guidance and Tourette Association of America for US-based support, but Tourettes Action is the main UK-focused route for both information and peer contact.
What training does Tourettes Action offer for employers or education professionals?
Tourettes Action offers separate training tracks for workplaces and for education settings, plus a parent/carer webinar. The employer-facing offer is framed around neurodiversity rather than Tourette syndrome alone, while the education offer is aimed at teaching and support staff.
Employer and workplace training
- Workplace Training: Supporting Neurodiversity — a broader session on supporting neurodivergent staff.
- Business Awareness Session: Understanding TS — an introduction to Tourette syndrome for a workplace audience.
- Lunch and Learn Session: Understanding TS — a shorter-format option, useful for teams that cannot spare a half or full day.
- Health and Social Care Training — for staff in health and social care roles.
Education professionals
- Training for those in education provisions — described as being for teaching and support staff. This is the main route for schools and colleges wanting staff to understand tics and TS in the classroom.
- Parent/Carer Webinar: Supporting Young People with Tics and TS — not staff training, but relevant to education professionals who work alongside families.
How to choose
If your goal is a general workplace culture shift, start with the neurodiversity session. If the need is a specific team understanding a colleague or student with TS, the Understanding TS sessions are the closer fit. Schools should go straight to the education-provision training, since the workplace sessions are not written around classroom practice.
For dates, formats and booking, the charity's own events and training pages are the place to check, alongside its wider support offer at Tourettes Action. If you are commissioning training for a school, it also helps to look at the charity's education information for parents, carers and students, so staff training and family guidance reinforce each other.
How can I fundraise or donate to support Tourettes Action?
Tourettes Action offers several straightforward ways to give or raise money, ranging from one-off donations to organised events and ongoing giving. The charity's own site lists the main routes under its "Get involved" section.
Ways to donate
- Make a donation – the primary giving option listed on the site.
- Other ways to donate – alternative methods beyond a standard cash gift.
- Leave a legacy to Tourettes Action – include the charity in your will.
- Gift Aid your donation – if you are a UK taxpayer, this lets the charity reclaim tax on your gift at no extra cost to you.
- Play the lottery – the site promotes a lottery supporting the cause at £1 per week.
Ways to fundraise
- Tea for Tourette's – host a tea party to raise funds and awareness.
- Move for Tourette's – a physical activity fundraising event.
- Sponsored challenges – take on a challenge and collect sponsorship.
- Fundraise your way – create your own event or activity.
- Major running events – the site lists the London Marathon, LLHM and Great North Run among its event fundraising options.
- Shop TA Merchandise – buy branded items, which supports the charity.
A practical next step
If you are unsure which route fits you, start with the smallest commitment: make a single donation and tick the Gift Aid box if you are a UK taxpayer. That immediately increases the value of your gift without any extra effort. From there, decide whether you prefer a one-off activity (a tea party, a sponsored challenge) or something recurring (the weekly lottery). For anyone considering a legacy gift, it is worth speaking to a solicitor so the wording in your will is correct.
Choosing between giving and fundraising
| Your situation | Suggested route |
|---|---|
| Want to give quickly with no organisation | One-off donation, Gift Aid if eligible |
| Want to involve friends, family or colleagues | Tea for Tourette's or a sponsored challenge |
| Want an ongoing small commitment | The charity's weekly lottery |
| Want a physical challenge with a big event | London Marathon, LLHM or Great North Run |
| Planning your estate | Leave a legacy to Tourettes Action |
For full details, current event dates and any forms, go directly to the charity's own pages: Tourettes Action.
What events and weekends does Tourettes Action run for adults or young people with TS?
Tourettes Action runs a mix of weekend residentials and one-off events aimed at different age groups, plus a calendar of regional and awareness events. The main youth- and adult-focused programmes named on its site are TICfest, TA weekends for adults with TS, weekends for young adults, and TEENfest. The site also lists an events calendar, events by region, and Tourette's Awareness Month activities, which are open to the wider community rather than being age-specific programmes.
The main programmes
- TICfest — presented as a festival-style event for young people with TS, with its own "What is TICfest?" explainer and separate event pages (for example, TICfest events for 2026).
- TEENfest — a weekend format for teenagers, again with an explainer page and a dated event page (TEENfest 2026).
- TA weekends for adults with TS — weekends specifically for adults, with a page explaining what they involve and a 2026 date listed.
- Weekend for young adults — a separate weekend aimed at the young-adult age band, also with a 2026 date.
If you are trying to work out which one fits a particular person, the deciding factor is age band rather than diagnosis: TICfest and TEENfest sit at the younger end, the young adults weekend covers the transition years, and the adults weekend is for older adults. A parent booking for a 14-year-old, for example, would be looking at TEENfest or TICfest rather than the adults weekend.
Wider events and community activity
Beyond the residential weekends, the site lists an events calendar and events by region, so local meet-ups and one-off activities are organised geographically rather than as national programmes. Tourette's Awareness Month appears with pages for several consecutive years, and there are fundraising events such as Tea for Tourette's and Move for Tourette's, plus sponsored challenges including the London Marathon, LLHM and Great North Run. These are fundraising and awareness events rather than peer-support weekends, so they suit a different purpose — raising money or visibility rather than meeting other people with TS.
Support that runs alongside the events
The charity also offers ongoing support that does not depend on attending an event: a helpdesk, online support groups, in-person support groups, and new groups. For someone who cannot travel to a weekend, an online support group is the practical alternative. For professionals, there is a separate training strand covering workplace, education, health and social care settings.
How to choose
| If you want… | Look at… |
|---|---|
| A residential weekend for a teenager | TICfest or TEENfest |
| A weekend for someone in their late teens or twenties | Weekend for young adults |
| A weekend for adults | TA weekends for adults with TS |
| Local, lower-commitment contact | Events by region and support groups |
| To fundraise or raise awareness | Tea for Tourette's, Move for Tourette's, sponsored challenges |
A sensible next step is to open the specific programme page for the age band you need and check the dated event page, since the site lists separate pages for each year's events. If the dates do not work, the online and in-person support groups listed under "Find support" are the fallback. The organisation's own site is Tourettes Action.
What research has Tourettes Action funded and what projects are current?
Tourettes Action presents its research funding as a set of project pages organised by year, with a separate area for work described as current. That structure is the clearest signal of what the charity reports: grants made in specific funding rounds, plus an ongoing portfolio.
How the research pages are organised
- Funded projects by year – the site lists funded projects under 2017, 2018 and 2019 headings, so you can see which studies were supported in each round.
- Research projects – a broader section covering both current and previous projects, separating work still under way from completed studies.
- About TS research context – the condition information pages (causes, symptoms, co-occurring symptoms, diagnosis, management) sit alongside the research section and help explain why particular questions get funded.
What this means in practice
If you are a researcher checking whether your area has already been supported, start with the year-by-year funded project lists, then check the current projects page to avoid duplicating work. If you are a family looking for evidence behind a treatment decision, the research pages are a directory rather than a summary of findings, so you will usually need to follow the project titles to published results.
For a broader view of UK Tourette syndrome research, the charity's own pages are the primary source here; other organisations such as NHS cover clinical guidance, and Great Ormond Street Hospital publishes information on specialist assessment.
A useful next step
Decide what you need before browsing: funding history, current studies, or practical treatment evidence. The first two are on the research pages; the third is better served by the managing TS and behavioural therapies sections, since a project listing alone will not tell you whether an approach works for you.
United Kingdom
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