Ataxia

What Ataxia does

Ataxia UK is the leading UK-registered charity exclusively focused on supporting people affected by all forms of ataxia, operating from a registered headquarters in London with dual charitable registration in Scotland (SC040607) and England & Wales (1102391) and a headcount of 11-50 employees. Its mission is twofold: funding research into treatments and cures, and delivering direct support services to patients, families, and clinicians. Core programmes include a free telephone Helpline (0800 995 6037), accredited Specialist Ataxia Centres in Sheffield, London, and Oxford for both adults and children, a Grants Programme, an Advocacy Service, voice banking, ID cards, online forums, local branches, and a South West Specialist Ataxia Nurse service. Membership is delivered through a free "Friends of Ataxia UK" programme that ships the Ataxia Magazine and a monthly eNewsletter.

Underlying technology is a modest digital platform: a website (ataxia.org.uk) hosting an online shop, donations, event registration, blog, and video content, supplemented by a Health Unlocked peer-support forum and standard social channels (Facebook, YouTube, Instagram, LinkedIn). There is no disclosed proprietary software platform, app, or API. The core "product" the organisation delivers at scale is funded research: between 2016 and 2026 Ataxia UK supported 62 research projects across 17 countries, generating 72 journal articles, 41 research tools, 6 databases, and 62 researcher awards. In 2026 it co-launched the FA Alliance Innovation Fund with the Oxford-Harrington Rare Disease Centre, awarding £500,000 to five University of Oxford researchers across epigenetic therapy, GAA-repeat proteomics, and digital clinical outcome assessments for Friedreich's Ataxia.

The business model is a traditional UK charity income stack: individual donations (one-off, recurring, Gift Aid, in-memory giving), legacies and gifts in Wills, community fundraising events, shop merchandise sales, roadshow and conference ticket revenue (£30 adult / £12.50 youth / free under-12s), and philanthropic grants. There are no equity investors, no parent company, and no subsidiaries. The organisation also generates influence revenue in the form of biotech sponsorships (Lexeo and Biohaven at the Liverpool Roadshow 2026) and pursues active health policy work via the #AccessOmavNow parliamentary campaign.

Name

Ataxia

Legal name

Ataxia UK

Website

https://ataxia.org.uk

Company type

Private

Founded year

2008

Operating status

Operating

Headcount range

11–50 employees

Short description

Ataxia UK is the leading UK charity dedicated to all forms of ataxia, funding research into treatments and cures while delivering helpline, specialist centre, advocacy, and community support services to patients, families, and clinicians across the United Kingdom.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Support and Research Funding

NAICS

Individual and Family Services (6241), Voluntary Health Organizations (813212)

SIC

Services-Social Services (8300)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industry

Disability Services & Assistive Solutions (Accessibility, Assistive Tech) (BPAGALAM)

Keywords

• Rare disease charity
• Patient support services
• Neurological research funding
• Ataxia advocacy
• Health helpline services

Headquarters

HQ city

London

HQ country

United Kingdom

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Philanthropy: Charitable donations from individuals, including one-off and recurring donations. The organization receives gifts in Wills and legacy donations. Gift Aid scheme maximizes UK taxpayer donations.
2. Membership (Friends of Ataxia UK): Free membership program providing access to Ataxia Magazine, eNewsletter, and support services. Serves as the primary community engagement vehicle.
3. Event Revenue: Ticket sales for roadshows and conferences. Adult tickets priced at £30, with reduced rates for ages 13-18 and free admission for under-12s.
4. Shop Sales: Sale of merchandise including clothing, accessories, and publications.
5. Fundraising Events: Community fundraising activities including challenges, events, and registered fundraisers generating voluntary contributions.

Pricing tiers

Go-to-market motion1 record

Distribution channels5 records

Marketing channels9 records

Core offering

Ataxia UK is the leading UK charity that funds scientific research into treatments and cures for ataxia while delivering a portfolio of free support services to people affected by the condition. Core offerings include a telephone Helpline, accredited Specialist Ataxia Centres in Sheffield, London, and Oxford, an Advocacy Service, Ataxia UK Magazine, Roadshows/Conferences, Branches and Support Groups, Grants, Voice Banking, and ID Cards, supported by a free 'Friends of Ataxia UK' membership community.

Product overview

Ataxia UK is a charitable organization (registered in Scotland SC040607 and England & Wales 1102391) that serves as the leading UK charity supporting people affected by any of the ataxias. The organization provides a unified portfolio of support services centered around its Helpline, which offers information and advice to those affected. Additional services include Specialist Ataxia Centres for expert healthcare, an Advocacy Service for policy influence, and community programs such as Branches & Support Groups and Online Forums. The charity disseminates knowledge through publications including the Ataxia UK Magazine (sent to Friends members) and annual Research Impact Reports documenting funded research outcomes. Community engagement is facilitated through Roadshows and Conferences, while practical support includes Grants, Voice Banking services, and ID Cards. Research funding is a core activity, with 62 research projects awarded between 2016 and 2026, supporting researchers through collaborations with universities and international organizations.

Differentiator

Problem solved

Functional benefit

Products and services

• Ataxia UK Helpline

Quantifiable outcome

• £500,000 awarded to five researchers through FA Alliance Innovation Fund for Friedreich's Ataxia therapeutic research
• +1 more outcomes

Named customers2 records

Segments4 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Nine partnerships are on record, tiered core and minor.

• Oxford-Harrington Rare Disease CentrecoreStrategic or Co-development Partner · 10 February 2026The Oxford-Harrington Rare Disease Centre collaborates with Ataxia UK on Friedreich's Ataxia research. The FA Alliance Innovation Fund, in partnership with the Centre, awarded £500,000 to five researchers at the University of Oxford exploring novel therapeutic approaches including epigenetic therapy, GAA-repeat proteomics, and digital clinical outcome assessments.
• FA AlliancecoreStrategic or Co-development PartnerFA Alliance Innovation Fund provides research funding for Friedreich's Ataxia therapeutic development. Combined with Ataxia UK's Catalyst Fund, the partnership demonstrates philanthropy being deployed to translate early-stage research into potential treatments.
• LexeominorGTM or Marketing PartnerLexeo sponsored the Liverpool Roadshow 2026 event as an exhibitor, supporting Ataxia UK's community education events.
• BiohavenminorGTM or Marketing PartnerBiohaven sponsored the Liverpool Roadshow 2026 event as an exhibitor, supporting Ataxia UK's community education events.
• The Walton Centre, NHS Foundation TrustcoreImplementation/ SI/ Consulting PartnerThe Walton Centre provides specialist neurologist Dr Michael Bonello for Q&A sessions at Ataxia UK roadshow events, offering expert medical insight to the ataxia community.
• University College London (UCL)coreStrategic or Co-development PartnerUCL researchers, including Dr Ricardo Parolin Schnekenberg, Prof Joanne Ng, Prof Selina Wray, and Prof Francesco Muntoni, conduct drug repurposing research for ITPR1-associated cerebellar ataxias, funded by Ataxia UK.
• Dr Lisa BuncoreStrategic or Co-development PartnerDr Lisa Bun, a specialist physiotherapy and associated professions lead at University of Plymouth, provides evidence-based rehabilitation research for people with ataxia, with Ataxia UK funding support.
• Dr Massimo De BattisticoreStrategic or Co-development PartnerCo-funded project with the National Ataxia Foundation supporting research at Radboud University Medical Center targeting Spinocerebellar Ataxia Type 3 (SCA3).
• Friedreich's Ataxia Research Alliance (FARA)coreStrategic or Co-development PartnerJoint funding collaboration for research projects including Dr Massimo De Battisti's work, combining resources with Stichting Friedreich Ataxie (Friedreich's Ataxia Research Alliance) for 2024 second project funding.

Scale indicators8 records

Recent moves5 records

Expansion highlights5 records

Direct peers

• Friedreich's Ataxia Research Alliance (FARA): US-based nonprofit dedicated to Friedreich's Ataxia research and patient support. Already an active partner of Ataxia UK on joint funding; structurally identical disease-specific research funder and advocacy body.
• National Ataxia Foundation: The leading US ataxia charity; funds research, provides support, and convenes the patient community. Directly comparable disease-specific nonprofit mission and revenue model, though operating in North America rather than the UK.
• Huntington's Disease Association: UK charity for Huntington's disease offering specialist advice services, regional branches, family support, and research engagement. Highly comparable rare neurological disease charity operating model.
• Motor Neurone Disease Association: UK charity for MND/ALS with comparable structure: research funding portfolio, regional branches, specialist care centre network, advocacy campaigns, and donor-funded revenue mix.
• Muscular Dystrophy UK: UK charity funding neuromuscular research and supporting affected families. Closely comparable mission, UK operating scope, specialist centre partnerships with NHS, and community-led engagement model.

Regional players

• Ataxia-Friedreich Initiative (AFI) / Stichting Friedreich Ataxie: European Friedreich's Ataxia research and patient advocacy organisation. Active joint funder with Ataxia UK; comparable disease-specific mission but continental European operating scope.

Broad incumbents

• Epilepsy Action: UK neurological charity providing helpline, support services, research funding, and advocacy. Similar UK charity operating model and community-led GTM, though addressing a more prevalent condition.
• Genetic Alliance UK: UK alliance of genetic and rare disease patient organisations. Comparable rare disease advocacy and policy-influencing role, though operating as an umbrella rather than a single-disease charity.
• Parkinson's UK: Larger UK neurological charity with research funding, support services, helpline, and advocacy. Same revenue model and UK charity footprint but serves a much larger disease population.
• Alzheimer's Research UK: UK-based neurodegenerative disease research charity with donor-funded model, research grant programmes, and advocacy function. Similar charitable structure and research-focused mission in adjacent neurology space.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/user/AtaxiaUKonline
• Facebookfacebook.com/ataxiauk
• LinkedInlinkedin.com/company/ataxia-uk
• Instagraminstagram.com/ataxia_uk/?hl=en
• Xx.com/AtaxiaUK

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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

Frequently asked questions about Ataxia