Huntington's Disease Association

What Huntington's Disease Association does

The Huntington's Disease Association is a UK registered charity (Charity number 296453; Company number 2021975, limited by guarantee) founded in 1971 and headquartered at Liverpool Science Park, IC1, 131 Mount Pleasant, Liverpool. Operating across England and Wales, it is the only organization specifically dedicated to supporting people affected by Huntington's disease, a genetic, progressive, neuro-degenerative condition affecting an estimated 8,000 people in the UK with up to 32,000 at risk. Around 64 staff coordinate a portfolio of services for three principal beneficiary groups: individuals and families affected by Huntington's, health and social care professionals, and children/young people aged 8-25 in HD-affected families.

The core deliverable is the Specialist Huntington's Disease Advisory Service — a national team of field advisers providing personalized, non-clinical guidance across the disease journey (genetic testing, symptoms, palliative care, bereavement, mental health, financial support). This is supplemented by a Youth Engagement Service with dedicated youth workers, an online peer-support message board, volunteer-led branches and support groups across all ten English regions plus Wales, professional training courses, welfare grants, and a Care Home 'Quality Assured' accreditation program with associated directory. Patient and public involvement is delivered through HD Voice and HD Youth Voice advocacy groups. The technical stack is non-proprietary; service delivery relies on direct contact (helpline 0151 331 5444), digital channels (website, message board, webinars), and supporting tools such as the Recite Me accessibility toolbar for WCAG 2.1 AA conformance.

The organization operates as a non-profit with five named revenue streams: individual donations (with reference giving amounts such as £27.85 for helpline support and £67.69 for care and support groups), fundraising events (skydiving at £70 registration/£395 minimum sponsorship; Snowdon climb at £45/£100; running events; annual HDPlay challenge), e-commerce merchandise sales through an online shop with £4.99 standard delivery via Royal Mail, a recurring lottery program, and an annual membership scheme with voting rights at the AGM. All services to beneficiaries are free of charge; pricing applies only to merchandise and paid fundraising participation. Marketing reaches supporters and families through the website, social channels (Facebook, X, TikTok, Instagram, LinkedIn, YouTube), email newsletters, online advertising on Google and Meta, ambassador stories including BBC Lifeline Appeals, and an annual community conference.

Name

Huntington's Disease Association

Legal name

Huntington's Disease Association

Website

https://hda.org.uk

Company type

Private

Founded year

1971

Operating status

Operating

Headcount range

51–100 employees

Short description

The Huntington's Disease Association is a Liverpool-headquartered UK charity (founded 1971) that delivers specialist advisory services, youth support, professional training, and a volunteer branch network for individuals and families affected by Huntington's disease across England and Wales, funded through donations, fundraising events, an online shop, a lottery, and membership.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Disease Support Services

NAICS

Voluntary Health Organizations (813212), Other Individual and Family Services (624190), Child and Youth Services (62411)

SIC

Services-Social Services (8300), Services-Health Services (8000)

akta.pro primary industry

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

Keywords

• Huntington's disease support
• Genetic disease advisory
• Patient advocacy services
• Nonprofit healthcare support
• Specialist disease advisers

Headquarters

HQ city

Liverpool, Merseyside

HQ country

United Kingdom

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations: The organization receives donations from individuals, corporate donors, trusts and foundations. Donation amounts mentioned include £27.85 for helpline support and £67.69 for care and support groups.
2. Fundraising events: Participants raise money through various challenges including skydiving (£70 registration, £395 minimum sponsorship), climbing Snowdon (£45 cost, £100 minimum sponsorship), running events, and the annual HDPlay fundraising challenge.
3. Shop sales: The organization operates an online shop selling merchandise including hoodies, cycling tops, running vests, technical t-shirts, and adult t-shirts. Prices are quoted in UK Pounds Sterling inclusive of VAT.
4. Lottery: The organization runs a lottery program as part of its fundraising activities.
5. Membership: Annual membership program for supporters with voting rights at the AGM.

Pricing tiers

Go-to-market motion1 record

Distribution channels5 records

Marketing channels7 records

Core offering

The Huntington's Disease Association is a UK registered charity that provides specialist advisory, emotional, and informational support services to individuals and families affected by Huntington's disease across England and Wales. Its core offering is the Specialist Huntington's Disease Advisory Service delivered by a team of regional advisers, supplemented by a Youth Engagement Service for ages 8-25, volunteer-led local branches and support groups, an online peer-support message board, professional training courses, welfare grants, and a care home quality-assured accreditation programme.

Product overview

Huntington's Disease Association is a UK charity offering a coordinated set of support services for individuals and families affected by Huntington's disease. The core offering is the Specialist Huntington's Disease Advisory Service, supported by a Youth Engagement Service for children and young people aged 8-25. The organization provides professional training courses, manages volunteer-led branches and support groups across England and Wales, and operates an online peer support message board. Additional services include welfare grants, a care home quality assurance accreditation program, and various fundraising events and campaigns including the annual HDPlay challenge. The organization also runs an online shop selling branded merchandise with proceeds supporting the charity.

Differentiator

Problem solved

Functional benefit

Products and services

• Specialist Huntington's Disease Advisory Service

Named customers1 record

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Scale indicators3 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• Cystic Fibrosis Trust: UK charity supporting people with another inherited genetic condition, offering specialist services, welfare grants, peer community, and research partnerships — comparable rare-genetic-disease support model.
• Muscular Dystrophy UK: UK charity for a group of rare genetic neuromuscular conditions, providing specialist advisers, regional support, care home advocacy, and research funding — directly comparable rare-disease support charity.
• Parkinson's UK: UK charity for another neurodegenerative disease, providing specialist advisers, local branches, helpline, peer support, and research funding. Closest direct operating-model peer to HDA.
• Motor Neurone Disease Association: UK disease-specific charity for MND delivering regional care advisers, support groups, helpline, welfare grants, and care home quality frameworks — near-identical operating model to HDA in a similarly rare disease context.
• Scottish Huntington's Association: Sister HD charity exclusively serving Scotland with HD specialist advisers, family support, and youth services. The most directly comparable disease-specific peer operating an identical mission in a different UK nation.

Broad incumbents

• Macmillan Cancer Support: Large UK disease charity providing specialist nurses, financial grants, helpline, and information services — a broader incumbent demonstrating how a disease-specific charity can scale the same operating model HDA uses.
• Alzheimer's Society: UK-wide dementia charity offering specialist advisers, helplines, local services, and research funding. Directly comparable operating model to HDA but at vastly larger scale and broader neurodegenerative focus.
• Multiple Sclerosis Society: Large UK neurological disease charity with local branches, helpline, grants, and research grants. Operates the same multi-channel support infrastructure as HDA at significantly larger scale.

Regional players

• Hereditary Disease Foundation: US-based foundation focused on Huntington's disease research funding and family support. A geographic peer for the same disease, but operating primarily in research grantmaking rather than direct service delivery.

Emerging players

• Genetic Alliance UK: UK umbrella charity for genetic and rare conditions, including Huntington's. Provides policy advocacy, information resources, and community networks that overlap with HDA's patient support and information mission.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xx.com/HDAinfo
• YouTubeyoutube.com/@huntingtonsdiseaseassociation
• Facebookfacebook.com/HuntingtonsDiseaseAssociation
• LinkedInlinkedin.com/company/hdauk
• Instagraminstagram.com/huntingtonsdiseaseassociation

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Funding overview

Funding rounds

Investors

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

M&A

Investments

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Frequently asked questions about Huntington's Disease Association