Huntington's Disease Association
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.
- Company typePrivate
- Founded1971
- HeadquartersLiverpool, Merseyside, United Kingdom
- Headcount51–100
- GTM typeB2C
- OfferingServices
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.
Huntington's Disease Association firmographics
Firmographics- 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
Huntington's Disease Association industry classification
Industry- 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
Where Huntington's Disease Association is headquartered
LocationHeadquarters
- HQ city
- Liverpool, Merseyside
- HQ country
- United Kingdom
- HQ region
- Europe
Offices1 record
Markets served
Huntington's Disease Association business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Others
Revenue model
- 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.
- 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.
- 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.
- Lottery: The organization runs a lottery program as part of its fundraising activities.
- Membership: Annual membership program for supporters with voting rights at the AGM.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Other | Pay-as-you-go | Skydive challenge fundraising event |
| Other | Pay-as-you-go | Snowdon climb challenge |
| Unit Pricing | Pay-as-you-go | Standard delivery charge for shop orders |
| Unit Pricing | Pay-as-you-go | Merchandise sizing - Hoodies |
Go-to-market motion1 record
Distribution channels5 records
Marketing channels7 records
Huntington's Disease Association product offering
Product offeringCore 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
Companies that use Huntington's Disease Association
Customer profileNamed customers1 record
Segments3 records
Ideal customer profiles3 records
Huntington's Disease Association technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Huntington's Disease Association partnerships and signals
Strategic signalScale indicators3 records
Recent moves6 records
Expansion highlights6 records
Huntington's Disease Association competitors and assessment
Company assessmentDirect 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
Huntington's Disease Association social profiles
Digital presenceHuntington's Disease Association compliance and trust
Trust signalCompliance2 records
Huntington's Disease Association financial estimates
Financial estimateRevenue estimate
Valuation estimate
Huntington's Disease Association leadership team
Management profileNumber of profiles
Huntington's Disease Association funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Huntington's Disease Association M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about Huntington's Disease Association
What does Huntington's Disease Association do?
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.
Is Huntington's Disease Association a public or private company?
Huntington's Disease Association is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Huntington's Disease Association founded?
Huntington's Disease Association was founded in 1971. It employs 51 to 100 people.
Where is Huntington's Disease Association based?
Huntington's Disease Association is headquartered in Liverpool, Merseyside, United Kingdom, in the Europe region.
How does Huntington's Disease Association make money?
Five revenue lines are on record. Donations are the primary driver. The others are fundraising events, shop sales, lottery and membership.
Who are Huntington's Disease Association's main competitors?
Direct peers on record are Cystic Fibrosis Trust, Muscular Dystrophy UK, Parkinson's UK, Motor Neurone Disease Association and Scottish Huntington's Association. Broad incumbents are Macmillan Cancer Support, Alzheimer's Society and Multiple Sclerosis Society. Hereditary Disease Foundation is listed as a regional player. Genetic Alliance UK is listed as an emerging player.
Does Huntington's Disease Association have an API?
No public API is recorded for Huntington's Disease Association.
What industry is Huntington's Disease Association in?
Huntington's Disease Association's product category is Patient Advocacy and Disease Support Services. Its primary akta.pro industry code is BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS). Its NAICS code is 813212 and its SIC code is 8300.