Scottish Huntington's Association

What Scottish Huntington's Association does

Scottish Huntington's Association (SHA) is a Scottish charitable company limited by guarantee, founded in 1989 by families affected by Huntington's disease, headquartered in Paisley. It is the only charity in Scotland exclusively dedicated to Huntington's disease, operating three core service lines: the HD Specialist Service (a nationwide network of specialist staff delivering care coordination, physical health, mental health, and wellbeing support to all adults in HD families across 12 NHS Board areas), the Youth Service (Specialist Youth Advisors providing personalised support, residential breaks, and age-appropriate resources for children and young people aged 8–25), and the Financial Wellbeing Service (FCA-authorised income maximisation and benefits advice). These services sit under the National Care Framework for Huntington's Disease, the world's first such resource, co-developed with the Scottish Government Clinical Priorities Team. The HD Specialist Service alone reports that over £6 million in financial gains has been secured for families since 2015.

The organisation operates a hybrid funding model: core delivery is commissioned by NHS Boards and Health and Social Care Partnerships across Scotland, supplemented by individual and corporate donations (JustGiving integration, payroll giving, matched giving), charitable trust and foundation grants (BBC Children in Need awarded £120,000), event-based fundraising (Dance 100, Lucky Lotto at £3/month, Kiltwalk, Edinburgh Marathon), and a freemium membership programme. Distribution is direct via nine regional offices embedded within NHS hospital sites (Edinburgh Western General, Aberdeen Royal Infirmary area, Dundee Kings Cross, Inverness Raigmore, plus Ayrshire, Fife, Lanarkshire, Glasgow, and Dumfries & Galloway) and a community network of local branches and support groups in six health board areas.

The platform architecture comprises a digital care framework portal (care.hdscotland.org), the 'I Am Max' educational video game co-developed with Abertay University, the Tip Jar financial literacy resource, online application systems for grants and membership, and a digital factsheet library. The organisation is governed by a Board of Trustees (chaired by Aarran Air), led by CEO Alistair Haw, and supported by an Extended Leadership Team; the patron is Olympic rower Sarah Winckless MBE. Recent strategic activity includes the 2024 launch of the Impact and Engagement Fund for HD research, 2024 National Youth Work Award recognition, and 2026 partnerships including Tabletop Scotland as Charity of the Year and addition of former Scottish Government Clinical Priorities lead Liz Porterfield MBE to the Board.

Name

Scottish Huntington's Association

Legal name

Scottish Huntington's Association

Website

https://hdscotland.org

Company type

Private

Founded year

1989

Operating status

Operating

Headcount range

51–100 employees

Short description

Scottish Huntington's Association is a Scottish charity founded in 1989 and the only organisation in Scotland exclusively dedicated to supporting people impacted by Huntington's disease. It delivers three core services — HD Specialists, Youth Service, and Financial Wellbeing — across 12 NHS Board areas under a Scottish Government-backed National Care Framework.

Ownership category

akta.pro rank

Product category

Neurological Disease Support Services

NAICS

Services for the Elderly and Persons with Disabilities (624120), Voluntary Health Organizations (813212), Services for the Elderly and Persons with Disabilities (62412)

SIC

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

akta.pro primary industry

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

akta.pro secondary industries

Mental Health & Crisis Support Services (BPAGACAD), Special Education, Disability Support & Inclusive Education Nonprofits (BPAGADAH)

Keywords

• Huntington's disease support
• Neurological care services
• Family caregiver assistance
• Youth advisory services
• Financial wellbeing advisory

Headquarters

HQ city

Paisley

HQ country

United Kingdom

HQ region

Europe

Offices9 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others, Infrastructure

Revenue model

1. NHS and Health Board Commissioning: Services commissioned by NHS Boards and Health and Social Care Partnerships throughout Scotland for delivery of specialist Huntington's disease support
2. Individual and Corporate Donations: One-time and recurring donations from individuals and corporate partners, including payroll giving and matched giving programs
3. Event-Based Fundraising: Revenue from participation events including Lucky Lotto, Dance 100, Tough Mudder, Kiltwalk, Edinburgh Marathon, and various challenge events
4. Charitable Trust and Foundation Grants: Funding from trusts and foundations including BBC Children in Need (£120,000 awarded), and legacy donations supporting research and services
5. Membership Programme: Free membership with optional donations, categories including Principal Member, Representative Member, and Associate Member
6. Corporate Partnerships: Charity of the Year partnerships, workplace challenges, and corporate sponsorship arrangements

Pricing tiers

Go-to-market motion1 record

Distribution channels5 records

Marketing channels9 records

Core offering

Scottish Huntington's Association is a Scottish charity that delivers specialist, personalised support services to people impacted by Huntington's disease across Scotland. Its core offering comprises an HD Specialist Service (clinical care coordination for adults), a Youth Service (advisory and wellbeing support for children and young people), a Financial Wellbeing Service (FCA-authorised benefits and debt advice), and the National Care Framework for Huntington's Disease. Services are commissioned by NHS Boards, supported by donations, grants, and fundraising, and are delivered free of charge to beneficiaries.

Product overview

Scottish Huntington's Association operates as a multi-service charitable organisation offering a coordinated portfolio of specialist support services for Huntington's disease families across Scotland. The core offering comprises three interconnected specialist services: (1) the HD Specialist Service, a nationwide network providing clinical care management and emotional support to all adults in Huntington's families; (2) the Youth Service, delivering specialist support through dedicated Youth Advisors to children and young people, including one-to-one sessions, group activities, summer camp and residential breaks; and (3) the Financial Wellbeing Service, providing FCA-authorised benefits advice and income maximisation support. These core services are underpinned by the National Care Framework for Huntington's Disease, the world's first such resource, and are coordinated with NHS HD Clinical Leads across all Scottish health boards. Additional offerings include Short Breaks Fund grants (up to £500), Welfare Grants for equipment and hardship relief, local Branches and Support Groups, the quarterly SHAre e-magazine, an extensive library of factsheets and youth-focused educational resources, the flagship Dance 100 fundraising event, and a Lucky Lotto subscription programme.

Differentiator

Problem solved

Functional benefit

Products and services

• HD Specialist Service A nationwide network of Huntington's Disease Specialists providing physical health, mental health, wellbeing support and care co-ordination for all adults within a Huntington's family, whether symptomatic, asymptomatic, at risk, or carers. The service is delivered across 12 NHS Board areas in Scotland.
• Youth Service Specialist Youth Advisors providing personalised support, age-appropriate information and resources, one-to-one sessions, group activities, residential breaks, and summer camp experiences for children and young people impacted by Huntington's disease across Scotland.
• Financial Wellbeing Service Expert advisors helping Huntington's families access benefits and allowances, providing income maximisation, budgeting advice, and support with benefit applications; authorised and regulated by the Financial Conduct Authority for money and debt advice. Has secured over £6 million in financial gains for families since 2015.
• National Care Framework for Huntington's Disease A government-backed National Care Framework outlining the care and support families should be entitled to, developed with the Scottish Government and the first resource of its kind in the world, raising care standards across Scotland.
• HD Clinical Leads Coordination Coordination and chairing of the national network of NHS-employed HD Clinical Leads (psychiatrists, neurologists, geneticists) who provide specialist medical advice and run specialist clinics supported by HD Specialist staff across all Scottish health board areas.
• Short Breaks Fund Fund providing up to £500 for Huntington's family members and carers to enjoy respite breaks of less than 4 nights that would otherwise be unaffordable. Established through a legacy gift; not means tested, but families cannot have received Short Breaks funding in the previous year to re-apply.
• Welfare Grants Grants providing funding for essential equipment and to alleviate financial hardship for individuals living with Huntington's disease, carers, and young people up to age 25 in affected families. Households must have savings under £8,000 and not have received a grant in the last 12 months.
• Branches and Support Groups Volunteer-run local branches in Tayside, Fife and Moray, plus support groups operating in Greater Glasgow and Clyde, Lothian, Tayside, Fife, Highland and Grampian, providing mutual support, local engagement, and an annual Family Gathering event.
• Membership Programme Free membership with optional donations, categories including Principal Member, Representative Member, and Associate Member, providing accountability to members through Annual General Meetings.
• SHAre E-Magazine Quarterly digital e-magazine providing news, stories, and updates for the Huntington's community in Scotland.
• Dance 100 High-energy sponsored dance challenge in which participants dance to 100 songs back-to-back, the charity's flagship annual fundraising event held at Ross Bandstand in Edinburgh. Standard tickets £10, Standard Plus £15 (includes merchandise), concession and under-5 pricing available.
• Factsheets and Resources Downloadable factsheets covering disease overview, behaviour, communication, driving, employment, financial wellbeing, future planning, housing, mental health, mobility, care homes, nutrition, planning a family, research, and carer support.
• Lucky Lotto Monthly lottery subscription at £3/month offering cash prize draws (£250 first prize, £100 second prize), with proceeds funding specialist services for Huntington's disease families.

Quantifiable outcome

• Over £6 million in financial gains secured for families since 2015
• +3 more outcomes

Named customers6 records

Segments5 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature4 records

Partnerships

Ten partnerships are on record, tiered core, major and minor.

• Abertay UniversitycoreStrategic or Co-development Partner · 25 June 2026Collaboration with postgraduate game development students to create 'I Am Max' computer game for young people aged 14-18 growing up in Huntington's disease families. Students undertook research with Youth Service staff to understand disease impacts before development began.
• Tabletop ScotlandcoreGTM or Marketing Partner · 22 June 2026Tabletop Scotland Convention selected Scottish Huntington's Association as Charity of the Year for 2026. Partnership includes awareness raising at the convention (Royal Highland Centre, Edinburgh, September 4-6) and fundraising through the gaming community.
• Grant ThorntonmajorGTM or Marketing Partner · 1 July 2021Charity partnership bringing new opportunities for the Youth Service, including volunteer support and fundraising activities with the professional services firm.
• NHS Scotland (All Health Boards)coreStrategic or Co-development PartnerCommissioned by NHS Boards and Health and Social Care Partnerships throughout Scotland to deliver specialist Huntington's disease services. Coordinates national network of HD Clinical Leads.
• Scottish GovernmentcoreStrategic or Co-development PartnerDevelopment partner for the world's first National Care Framework for Huntington's Disease. Scottish Government backs the framework outlining care and support standards families should receive.
• Breathing Space ScotlandminorStrategic or Co-development PartnerOut-of-hours support partnership providing confidential helpline service for Scottish Huntington's Association clients when offices are closed. Breathing Space staff receive Huntington's disease awareness training.
• European Huntington's Disease Network (EHDN)majorStrategic or Co-development PartnerInternational research network providing portal for research opportunities. Scottish Huntington's Association participates in EHDN Clinical Research Congress and maintains representation in relevant forums.
• HD BuzzmajorStrategic or Co-development PartnerFounding partner of HD Buzz, a global news site focusing on latest Huntington's disease research news written by scientists in non-scientific language for the Huntington's community.
• University of StirlingmajorStrategic or Co-development PartnerPartnership through Research Sub-Committee leadership (Professor Louise McCabe) and Impact and Engagement Fund management for academic researchers in Scotland.
• University College London Huntington's Disease CentremajorStrategic or Co-development PartnerResearch partnership with Professor Ed Wild, Associate Director, supporting global Huntington's disease research and clinical trials.

Scale indicators7 records

Recent moves6 records

Expansion highlights6 records

Emerging players

• Carers Trust: UK charity supporting unpaid carers, including many family carers of people with Huntington's disease. Comparable in operating local-network support services, advocacy, and young-carer programmes, but focused on the carer role broadly rather than a single condition.

Direct peers

• Genetic Alliance UK: UK umbrella organisation of over 220 charities supporting people affected by genetic conditions, of which SHA is a member. Directly comparable as a peer membership body serving rare-disease communities, with overlapping policy, research, and family-advocacy mandates.
• Motor Neurone Disease Association: UK-wide charity supporting people affected by MND, a similarly severe, progressive neurological condition with comparably complex care needs. Operates specialist regional adviser teams commissioned by NHS bodies and provides financial support grants—closely mirroring SHA's service architecture.
• Multiple Sclerosis Society UK: UK charity for people with MS, another neurological condition requiring lifelong specialist support. Operates a similar mix of regional specialist staff, local branches, information resources, and research funding, making it a structurally comparable peer even though the disease profile differs.
• MND Scotland: Scotland-specific charity for Motor Neurone Disease, providing specialist support, grants, and research funding across Scottish health boards. The closest geographic and structural peer to SHA—a single-disease, Scotland-only charity with NHS-commissioned specialist advisers and family support.
• Huntington's Disease Association: The England and Wales equivalent of SHA, providing specialist support, information, and advocacy for people affected by Huntington's disease. Operates an identical mission and service mix (specialist advisers, family support, youth services, branches) but is constrained to different NHS jurisdictions, making it the most direct functional peer.

Broad incumbents

• Parkinson's UK: UK-wide charity for Parkinson's disease, another neurodegenerative movement disorder. Shares SHA's specialist adviser model, NHS-commissioned local services, research funding arm, and family/carer focus, but covers a much larger population across a different condition.
• Marie Curie: UK charity providing care and support for people with terminal illnesses including neurological conditions. Comparable NHS-commissioned care model and hospice/specialist-nurse framework, though focused on end-of-life care rather than long-term disease management.
• Alzheimer's Society: UK-wide charity supporting people affected by dementia, a closely related neurodegenerative condition. Comparable in commissioning structure (NHS contracts), local service presence, and fundraising model, but operates at vastly greater scale across multiple dementia subtypes rather than a single disease.
• Cancer Research UK: Largest UK cancer-research charity with a substantial information and support function. Comparable as a major UK voluntary health organisation with research funding, patient information resources, and campaigning, but operating at much greater scale across many cancer types.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks7 records

Key highlights7 records

Customer concentration

• Xx.com/ScottishHD
• Facebookfacebook.com/ScottishHuntingtonsAssociation
• LinkedInlinkedin.com/company/scottish-huntington-s-association

Revenue estimate

Valuation estimate

Number of profiles

Profiles14 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 Scottish Huntington's Association