Alström Syndrome UK

What Alström Syndrome UK does

Alström Syndrome UK (ASUK) is a patient-led charitable organisation founded in 1998 and headquartered in Torquay, Devon, that supports individuals and families affected by Alström Syndrome, an ultra-rare genetic condition affecting multiple organ systems. The charity serves an estimated 100 diagnosed individuals in the UK through a coordinated suite of services including personalised wellbeing support (1:1 and group sessions), the ASUK Grants programme (offering £50–£500 to adults for activities), the Alström Syndrome Medical Handbook, T-KASH transition resources for young people, and a Patient Registry that supports research and global data collection. Operational delivery is carried out by a small core team (1–10 employees) comprising Care Coordinators, a Wellbeing Coordinator, a National Transition Coordinator, an Operations Manager, and a Finance Manager, under Chief Executive Kerry Leeson-Beevers.

ASUK's technical and clinical backbone rests on its role as the gateway to NHS specialist multi-disciplinary Alström clinics at Birmingham Women's and Children's Hospital and Queen Elizabeth Hospital Birmingham, alongside a research collaboration network spanning the University of Birmingham, Newcastle University, Keele University, University of Exeter, Moorfields Eye Hospital, and the LifeArc Centre for Rare Disease Trials. The charity convenes the Breaking Down Barriers Network of 70+ rare disease organisations and the AS Global international network, which has connected participants from 23 countries since the 2020 virtual conference. Engagement touchpoints include the annual ASUK Conference and Family Festival, podcasts, webinars, seasonal newsletters, and social media (Facebook, YouTube), supplemented by partnerships with Family Fund, Happy Days, RNIB, Sport England, and Sense for grants and accessible activities.

The organisation is funded almost entirely through voluntary income: individual donations via JustGiving, family-led fundraising challenges, grants from UK charities and Sport England, and philanthropic research funding including LifeArc PhD studentships. No fees are charged to beneficiaries for support services, and no revenue figure is publicly disclosed. ASUK is governed by a Board of Trustees that includes clinical leaders (Dr Tim Barrett, Dr Tarek Hiwot), a Chartered Accountant (Mokey Yates, formerly of EY), and individuals with lived experience of Alström Syndrome. The charity holds the PIF TICK Quality Mark for trusted health information (2026) and Cyber Essentials certification.

Name

Alström Syndrome UK

Legal name

Alström Syndrome UK

Website

https://alstrom.org.uk

Company type

Private

Founded year

1998

Operating status

Operating

Headcount range

1–10 employees

Short description

Alström Syndrome UK is a patient-led charity supporting approximately 100 individuals and families in the UK affected by the ultra-rare genetic condition Alström Syndrome, delivering personalised wellbeing services, NHS specialist clinic access, patient registry research support, grants, and an international AS Global network.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Support

NAICS

Individual and Family Services (6241), Other Individual and Family Services (624190)

SIC

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

akta.pro primary industry

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

Keywords

• Rare disease support
• Patient advocacy charity
• Genetic disorder services
• Community health support
• Specialist medical clinics

Headquarters

HQ city

Torquay

HQ country

United Kingdom

HQ region

Europe

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Fundraising: ASUK operates primarily through donations from supporters. The organization runs fundraising campaigns including the ASUK Big Activity Challenge, Everyday Heroes fundraising, and seasonal donation appeals (e.g., Christmas card replacement donations). JustGiving platform is used for online donations.
2. Grants to Families: ASUK provides grants to adults (18+) with Alström Syndrome through the Adult Empowerment Fund, offering between £50-500 to fund new activities. The ASUK Grants program also helps families access external grant opportunities through partnerships with organizations like Family Fund, Happy Days Children's Charity, and others.
3. Research Funding: ASUK commissions and supports research into Alström Syndrome, including the Journey to Diagnosis Report. Research is funded through charitable donations and collaborations with academic institutions including University of Birmingham, Queen Elizabeth Hospital Birmingham, and Newcastle University.

Go-to-market motion2 records

Distribution channels4 records

Marketing channels12 records

Core offering

Alström Syndrome UK (ASUK) is a patient-led UK charity that provides personalised support services to individuals and families affected by Alström Syndrome, an ultra-rare genetic condition. Its core offerings include access to NHS specialist multi-disciplinary clinics in Birmingham, a Wellbeing Service (1:1 and group sessions, webinars), the ASUK Grants programme (Adult Empowerment Fund of £50–£500), an Alström Syndrome Medical Handbook, the UK Patient Registry and Global Database, the international AS Global network, Breaking Down Barriers equity outreach, T-KASH transition resources, podcasts, family festivals, conferences, and regular newsletters — all provided free to beneficiaries.

Product overview

Alström Syndrome UK (ASUK) operates as a patient-led charity organisation offering a coordinated suite of support services, resources, and community programs rather than a technology product. The core offerings include the Wellbeing Service providing personalised mental health support, ASUK Grants for activity funding, the Alström Syndrome Medical Handbook as an educational resource, and the Patient Registry for research data collection. AS Global extends support internationally while the NHS Alström Clinics provide specialist healthcare access. Additional services include the Breaking Down Barriers outreach project, T-KASH transition resources, ASUK Podcast for community stories, annual Family Festival and Conference events, regular newsletters, and the Culture Family Forum. These services work together to provide holistic support from diagnosis through ongoing care and community connection.

Differentiator

Problem solved

Functional benefit

Products and services

• Wellbeing Service

Quantifiable outcome

• 80%+ of survey participants rated maintaining wellbeing as important (scoring over 5 out of 10)
• +2 more outcomes

Named customers6 records

Segments4 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

22 partnerships are on record, tiered minor and core.

• Keele University (Charlie Softley)minorStrategic or Co-development Partner · 1 August 2025ASUK Board of Trustees agreed to contribute funding for PhD student working on ciliopathy research focusing on Alström Syndrome using African clawed frog (Xenopus laevis) and aquatic flatworm (Schmidtea mediterranea) models. 3-year project starting August 2025.
• University of Birmingham Institute of Advanced StudiescoreStrategic or Co-development Partner · 1 January 2025Successful application submitted for Alström Syndrome workshop focusing on sensory loss, collaborating with scientists and education specialists. Workshop planned to include lived experience voices and potential for additional funding from the university.
• LifeArc Centre for Rare Disease TrialscoreStrategic or Co-development Partner · 1 October 2024Collaboration with Newcastle University, University of Birmingham, and Queen's University Belfast for the LifeArc ARDT Centre. Birmingham received funding for PhD studentships to develop models for rare disease clinical trials including Alström Syndrome drug screening targeting premature ageing.
• ProMetics (Canada)minorStrategic or Co-development Partner · 19 September 2015Aline Hagerimana, Director of Clinical Affairs, traveled from Canada to present at 2015 conference about fibrosis clinical trial research.
• Birmingham Women's and Children's HospitalcoreStrategic or Co-development PartnerASUK's primary clinical partner hosting the NHS specialist Alström Syndrome multi-disciplinary clinics. Professor Tim Barrett serves as Paediatric Clinical Lead. The hospital provides clinical care and hosts the NIHR Wellcome Clinical Research Facility for rare disease research.
• Queen Elizabeth Hospital BirminghamcoreStrategic or Co-development PartnerPartner hospital for NHS specialist Alström clinics and neuropathy research study led by Professor Tarek Hiwot. Adults attending AS multi-disciplinary clinics are invited to participate in research studies.
• Moorfields Eye HospitalminorStrategic or Co-development PartnerSight loss research collaboration as part of AS workshop initiative learning from developments in other conditions such as Usher Syndrome, Bardet Biedl Syndrome, and Leber's Congenital Amaurosis (LCA).
• University of Exeter (Professor Mitra Tavakoli)coreStrategic or Co-development PartnerCollaboration on neuropathy study led by Professor Tarek Hiwot and Professor Mitra Tavakoli exploring biomarkers in eye (ocular) and nervous system (neuropathy) to better understand pain and nerve damage in Alström Syndrome.
• Guide Dogs for the BlindminorImplementation/ SI/ Consulting PartnerExhibitor and supporter at ASUK annual conferences providing information about services for visually impaired individuals. Sue Bushell, Community Engagement Officer, presented at 2015 conference.
• Focus 4 VisionminorImplementation/ SI/ Consulting PartnerExhibitor at 2024 ASUK conference providing information about empowerment through sport and activities for individuals with visual impairments.
• Genetic Alliance UKcoreStrategic or Co-development PartnerASUK participated in Genetic Alliance UK's Rare Disease Day 2025 activities, contributing to reports on rare disease experiences and advocacy. Kerry Leeson-Beevers attended Westminster reception.
• Alström Syndrome International (USA)coreStrategic or Co-development PartnerInternational partner organization; Chase Palmer, President of Alström Syndrome International from America, presented at 2024 ASUK conference providing overview of global Alström work.
• AS ChinaminorStrategic or Co-development PartnerInternational partner; Jack Chu from AS China presented at 2024 ASUK conference sharing insights on Alström Syndrome work in China and global collaboration efforts.
• Breaking Down Barriers Network (70+ organizations)coreStrategic or Co-development PartnerASUK coordinates the Breaking Down Barriers Network, a network of over 70 rare disease organizations working together to reach diverse and underserved communities affected by genetic conditions for equitable access to health services. Includes Equity, Diversity and Inclusion Consultant Derek Sankar and Lived Experience Coordinator Sophie-Mira Roberts.
• Family FundminorGTM or Marketing PartnerPartnership for grants to families with children aged 0-17 years. ASUK helps families access Family Fund programs including holidays with Inspire, Butlins, and Haven.
• Happy Days Children's CharityminorGTM or Marketing PartnerPartnership providing grants for day trips and self-catering short breaks for families on lower incomes including Haven, theme parks, Centre Parcs, and Butlins.
• SenseminorChannel Partner/ Reseller/ DistributorHoliday programmes for children aged 8+ and adults independent of families. ASUK refers families to Sense services including accessible activity breaks.
• VICTAminorChannel Partner/ Reseller/ DistributorNational charity providing support to children and young adults 0-29 years with visual impairments. VICTA runs subsidized holidays and activities that ASUK refers families to.
• New College WorcesterminorStrategic or Co-development PartnerSpecialist educational institution hosting ASUK Family Festival on 11th July 2026 and past conferences. Provides accessible facilities and activities for young people with visual impairments.
• RNIB (Royal National Institute of Blind People)minorChannel Partner/ Reseller/ DistributorResource partnership providing 'Joy Makers Guide to Christmas' for accessible festive activities. ASUK wellbeing coordinator Melissa shares resources from RNIB.
• Calvert Trust ExmoorminorChannel Partner/ Reseller/ DistributorAccessible residential activity centre and charity for people with disabilities. ASUK refers families for bursary-supported accessible activity breaks.
• Bendrigg TrustminorChannel Partner/ Reseller/ DistributorResidential activity centre in Cumbria providing adventure activity breaks for people with disabilities. ASUK shares information about Bendrigg's October half-term break specifically for families with rare conditions.

Scale indicators5 records

Recent moves6 records

Expansion highlights4 records

Emerging players

• Retina UK: UK charity funding research into inherited retinal dystrophies, a clinical feature of Alstr鰉 Syndrome. Comparable in patient community focus and partnership potential (ASUK references Moorfields Eye Hospital for sight loss research); partial overlap rather than direct mission match.
• Genetic Alliance UK: UK umbrella organization representing over 200 rare disease patient groups, including ASUK. Comparable as a coordinating and advocacy body for rare disease charities, but operates at an aggregated level rather than direct patient services.

Direct peers

• Niemann-Pick UK: UK charity supporting patients with Niemann-Pick diseases, another set of ultra-rare genetic conditions. Highly comparable in operating model: small staff, family support services, research funding, and patient registry operation.
• Bardet-Biedl Syndrome UK: UK patient charity for Bardet-Biedl Syndrome, another ultra-rare genetic ciliopathy. Highly comparable in size, scope, and structure (small staff, patient registry, NHS partnerships, family events) and explicitly collaborates with ASUK through the ciliopathy research community.
• Metabolic Support UK: UK patient organization for inherited metabolic disorders, overlapping in clinical scope with Alstr鰉 Syndrome (which involves metabolic features including diabetes). Comparable scale and structure as a small UK rare disease charity.
• SWAN UK (Syndromes Without A Name): UK charity supporting families of children with undiagnosed genetic conditions. Comparable peer in the rare disease family support niche, with similar reliance on NHS partnerships, family events, and community-driven service models.
• Hypertrophic Cardiomyopathy Association: UK patient charity for HCM, an inherited cardiac condition. Comparable as a small disease-specific UK charity providing patient support, clinical guidance, and research advocacy; ASUK's cardiac involvement in Alstr鰉 makes HCM a relevant adjacent peer.
• Usher Syndrome UK: UK patient charity supporting individuals with Usher Syndrome, a rare genetic condition causing deafblindness. Comparable in being a small disease-specific UK charity coordinating NHS specialist services, patient registry, and family events; ASUK explicitly cross-references Usher research in its sensory loss workshop.
• Alstr鰉 Syndrome International: The US-based sister organization dedicated to Alstr鰉 Syndrome, founded as a parallel patient advocacy body. Directly comparable mission (support, research, awareness for the same ultra-rare condition) with active conference collaboration and global database coordination with ASUK.

Broad incumbents

• Cystic Fibrosis Trust: Major UK rare disease charity with national scale, research funding capability, and NHS clinic partnerships. Comparable in mission (genetic condition support, research funding, advocacy) but operates at far greater scale, offering a reference point for what ASUK could grow into, and a competitor for the rare disease donor pound.

Market position

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/@AlstromSyndromeUK
• Facebookfacebook.com/AlstromsyndromeUK
• Xx.com/AS_UK
• LinkedInlinkedin.com/company/alstrom-syndrome-uk

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles19 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Alström Syndrome UK