Tourette Syndrome (uk) Association Trading As Tourettes Action

What Tourette Syndrome (uk) Association Trading As Tourettes Action does

Tourettes Action (legal name: Tourette Syndrome (UK) Association, registered charity no. 1003317, company no. 2613993) is the only UK-wide charity dedicated solely to supporting individuals with Tourette syndrome (TS) and their families. Headquartered in Farnborough, Hampshire, the organisation delivers a comprehensive service portfolio: a helpdesk (live chat and email, Monday–Friday 10am–3pm), online support groups via Zoom, a national network of volunteer-led face-to-face support groups, residential community events (TICfest, TEENfest, Adult Weekends), eLearning courses, grants of up to £500, TA ID cards, the TS Passport documentation tool, and the TS Friendly Scheme accreditation programme for inclusive organisations. In 2024–2025 it reported supporting 4,600 individual enquiries and reaching over 2 million people through awareness campaigns, against a UK addressable population of more than 300,000 children and adults with tic disorders (approximately 1 in 100 school-aged children).

The underlying technology is service-led rather than product-led: a bespoke CMS website built with Storm12 supports eCommerce for donations, merchandise, and event ticketing; donation processing runs through PayPal and KindLink; online support groups are hosted on Zoom; and an event registration system (events.tourettes-action.org.uk) handles webinar bookings. Research capacity is delivered through a network of academic and clinical partnerships including the University of Nottingham (INTEND study on tic services, ORBIT digital therapy programme), University of Southampton, University of Birmingham, King's College London, University of Hertfordshire, University of Sussex, University of Minnesota (Tic Clips), Great Ormond Street Hospital, and funding from NIHR. Leadership comprises CEO Emma McNally, Chair of Trustees Marc Lewis (trustee since 2020), and Patron Daniel Katz MBE.

The business model is a donation-funded charity with no government support. Revenue streams include voluntary one-off and recurring donations, a £1/week lottery with a £25,000 top prize, professional training sessions priced £200–£300 (workplace, health and social care, education, lunch-and-learn formats), £5 webinar tickets, merchandise sales, and sponsored fundraising challenges (London Marathon, Great North Run, Move for Tourette's, Tea for Tourette's). Distribution is hybrid: digital self-service for donations, ecommerce, and webinars, paired with in-person support groups, residential events, and field-delivered training. The charity is registered with the Fundraising Regulator and offers CPD-certified training, with operational geographies limited to the United Kingdom.

Name

Tourette Syndrome (uk) Association Trading As Tourettes Action

Legal name

Tourette Syndrome (UK) Association

Website

https://tourettes-action.org.uk

Company type

Private

Operating status

Operating

Headcount range

1–10 employees

Short description

Tourettes Action is the UK's only nationwide charity dedicated to supporting people with Tourette syndrome and their families, delivering helpdesk services, peer support groups, professional training, community events, research funding, and awareness campaigns funded entirely by voluntary donations.

Ownership category

akta.pro rank

Headquarters

HQ city

Farnborough

HQ country

United Kingdom

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Donations: Voluntary donations from individuals, families, and supporters. The charity receives no government funding and relies entirely on voluntary contributions.
2. Lottery: Weekly lottery with tickets costing £1 per week, guaranteed weekly winner, top prize of £25,000.
3. Professional Training Services: Training sessions for employers, health professionals, and education professionals, priced at £200-300 per session.
4. Merchandise Sales: Sale of TA merchandise including awareness items, with orders sent Monday to Friday.
5. Event Tickets: Ticket sales for webinars (£5) and other events.
6. Fundraising Events: Sponsored challenges including London Marathon, Great North Run, Move for Tourette's, Tea for Tourette's, and general fundraising activities.

Pricing tiers

Go-to-market motion1 record

Distribution channels6 records

Marketing channels11 records

Core offering

Tourettes Action is a UK-wide charity that delivers direct support, information, education, and training services to people with Tourette syndrome, their families, and the professionals who work with them. Its offerings include a helpdesk, online and face-to-face support groups, eLearning courses, CPD-certified professional training for employers and health/education professionals, community events (TICfest, TEENfest, Adult Weekends), TA ID cards and TS Passport documents, equipment grants up to £500, webinars, research support services, awareness merchandise, and a weekly lottery.

Product overview

Tourettes Action is a support and research charity offering a comprehensive suite of services for people with Tourette syndrome and their families. The organization provides informational and educational resources (including eLearning courses and comic-book guides), peer support through online and face-to-face support groups hosted on Zoom, professional training programs for employers and healthcare/education professionals, community events (TICfest, TEENfest, Adult Weekends), TA ID cards and TS Passport documentation, grants for equipment, research support services, webinars, and a lottery. The portfolio centers on awareness, support, education, and advocacy rather than a technology product.

Differentiator

Problem solved

Functional benefit

Products and services

• Helpdesk Support Service Live chat and email support service available Monday to Friday 10am-3pm, providing direct assistance to people with Tourette syndrome and their families.
• Online Support Groups Video-based peer support groups hosted on Zoom, connecting the TS community across various segments including family, adults with TS, and specific age groups.
• In-Person Support Groups National network of face-to-face support groups facilitated by trained volunteers throughout the UK, with a minimum of two group leaders per group.
• Professional Training Programs Specialized CPD-certified training sessions including Workplace Training for Neurodiversity (£250), Business Awareness Sessions (£250), Lunch and Learn (£200), Health and Social Care Training (£300), Teaching and Support Staff Training, and Parent/Carer Webinars, delivered virtually to employers, health and education professionals.
• eLearning Courses Online learning modules including a general Understanding Tourette Syndrome course for anyone wanting to learn more about the condition, plus specialised training modules for professionals.
• Events and Community Programs Range of community events including TICfest family weekends, TEENfest for young people, Adult Weekends, Move for Tourette's fundraising challenges, Tea for Tourette's events, and awareness campaigns.
• TA ID Cards and TS Passport

Quantifiable outcome

• Reached over 2 million people through awareness campaigns
• +2 more outcomes

Named customers4 records

Segments6 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration4 records

Feature3 records

Partnerships

16 partnerships are on record, tiered minor, flagship and core.

• FND HopeminorStrategic or Co-development Partner · 23 June 2026Partner organization for FND awareness webinar. Carolyn Sullins from FND Hope served as guest speaker for webinar on Functional Neurological Disorder.
• ITVflagshipStrategic or Co-development Partner · 8 June 2026Tourettes Action has teamed up with ITV and award-winning production company 72 Films to develop a new documentary series focusing on young people living with Tourette syndrome. Freddie Flintoff is set to front 'Freddie Flintoff: Understanding Tourette's', inspired by BAFTA-winning film I Swear. The series will follow individuals and families across the UK, offering insight into life with Tourette's.
• 72 FilmsflagshipStrategic or Co-development Partner · 8 June 2026Award-winning production company partnered with Tourettes Action and ITV for the documentary series on Tourette syndrome. Responsible for production of Freddie Flintoff: Understanding Tourette's.
• Storm12coreTechnology or IntegrationHampshire-based web design agency that redesigned and developed the Tourettes Action website. Provided custom CMS, ecommerce functionality, and dynamic navigation tailored to the charity's brand and functional needs.
• University of NottinghamcoreStrategic or Co-development PartnerResearch partner leading the INTEND study on tic services improvement. Also working on ORBIT digital therapy programme, online learning resources co-designed with GPs, and various other TS research projects. Led by Professor Maddie Groom.
• University of SouthamptonminorStrategic or Co-development PartnerResearch partner conducting study on the impact of interoception on tics, anxiety and quality of life in young people with TS and functional tic-like behaviours. Led by Dr Valerie Brandt.
• University of BirminghamminorStrategic or Co-development PartnerResearch partner with multiple studies including brain imaging research with Clare Eddy and Andrea Cavanna, and coloured overlays research with Dr Amanda Ludlow and Professor Arnold Wilkins.
• Kings College LondonminorStrategic or Co-development PartnerResearch partner conducting sleep studies and research examining anxiety and low mood in children and young people with Tourette syndrome or Chronic Tic Disorders.
• University of HertfordshireminorStrategic or Co-development PartnerResearch partner conducting studies on eating and dietary behaviours in children and adults with TS.
• University of SussexminorStrategic or Co-development PartnerResearch partner for brain scanning studies examining brain activity in adults with and without TS.
• University of MinnesotaminorStrategic or Co-development PartnerResearch partner for Tic Clips project studying tics through video recordings to develop digital tic detection tools. Led by Dr Christine Conelea.
• Great Ormond Street Hospital NHS TrustcoreStrategic or Co-development PartnerClinical partner with Honorary Consultant Clinical Psychologists including Tara Murphy who contributed to European clinical guidelines and ORBIT trial.
• TS Friendly Scheme OrganizationsminorChannel Partner/ Reseller/ DistributorOrganizations that have completed TA training and committed to supporting people with TS. Includes various UK businesses and institutions that have achieved TS Friendly status.
• Avon Tyrrell Outdoor CentreminorChannel Partner/ Reseller/ DistributorAdventure centre venue for Adult Weekend events in February 2026 in Christchurch, Dorset.
• YHA Grinton LodgeminorChannel Partner/ Reseller/ DistributorYouth Hostel venue for Adult Weekend events in Yorkshire.
• Youlbury Action and AdventureminorChannel Partner/ Reseller/ DistributorAdventure activity venue for TEENfest 2026 in Oxfordshire.

Scale indicators8 records

Recent moves6 records

Expansion highlights7 records

Direct peers

• Different Strokes: UK charity supporting younger stroke survivors with peer support groups, information resources, and exercise-based programmes — similar niche-condition, support-group-led operating model.
• Epilepsy Action: UK charity providing support, information, training, and research funding for a specific neurological condition, with similar helpdesk, local groups, and professional training offerings to Tourettes Action.
• Ataxia UK: UK charity for a rare neurological condition delivering support services, research funding, and information resources — comparable small-scale, specialist-condition charity profile.
• MS Society: Major UK neurological-condition charity with parallel activities — research funding, support helpline, local groups, professional training, and awareness campaigning — operating at larger scale but with the same functional model.
• Headway - the brain injury association: UK neurological-condition charity operating a national helpline, local branches, professional training, and research funding — a near-analogue operating model to Tourettes Action in a related brain/neurology category.
• Migraine Trust: UK charity focused on a specific neurological condition, providing information resources, support services, research funding, and professional education — closely comparable niche-specialist charity model.
• Motor Neurone Disease Association: UK charity dedicated to a specific neurological condition delivering support services, research grants, professional education, and advocacy; structurally similar to Tourettes Action in mission, scope, and delivery format.
• Parkinson's UK: UK-wide registered charity dedicated to a specific neurological condition, combining research funding, support services, professional training, and advocacy — directly comparable structure and operating model to Tourettes Action.

Broad incumbents

• Mencap: Major UK disability charity providing support services, professional training, family resources, and advocacy; competes for the same donor pool and overlapping employer-training buyer.
• Mind: Large UK mental health charity with overlapping audiences (individuals, families, employers, healthcare professionals) and similar service pillars (helpline, training, advocacy); much broader in scope than Tourettes Action but competitively relevant for donor share.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xtwitter.com/tourettesaction
• YouTubeyoutube.com/user/UKTourettesAction
• Facebookfacebook.com/TourettesAction
• LinkedInlinkedin.com/company/tourettes-action
• Instagraminstagram.com/tourettesaction
• TikToktiktok.com/@tourettes_action

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Tourette Syndrome (uk) Association Trading As Tourettes Action