Duchenne UK

What Duchenne UK does

Duchenne UK is a UK-registered charity (Charity No. 1147094, Company No. 8030768) founded in 2012 through the merger of the Duchenne Children's Trust and Joining Jack, both established by parents of children diagnosed with Duchenne muscular dystrophy (DMD), a fatal genetic muscle-wasting condition. The charity is co-led by Emily Reuben OBE and Alex Johnson OBE, with Krishnan Guru-Murthy as Chair, and operates from a small team of 1-10 employees based in Hammersmith, London. Its mission is to accelerate the search for treatments and a cure for DMD, and it is positioned as the UK's largest funder of DMD research, having deployed more than £17 million on research, clinical trial infrastructure, and patient services since 2012.

The charity's core offerings fall into three interlocking areas: (1) research funding and infrastructure, including the DMD Hub (UK clinical trial capacity expansion), Project HERCULES (collaborative health economics and patient-reported outcomes evidence generation), and grant rounds overseen by a Scientific Advisory Board of named DMD experts; (2) clinical care improvement via DMD Care UK, which issues clinical recommendations including newly launched psychosocial guidelines; and (3) direct patient and family support, comprising the Family Folder for newly diagnosed families, emergency preparedness resources (Alert Cards, steroid-dependent wristbands), the Decipha educational support partnership, the Pathfinders partnership for adult DMD patients, and events such as Parent Information Days. There is no proprietary technology product; the stack is a standard charity website, CRM-backed newsletter, event registration, and social channels.

Duchenne UK is funded entirely through donations and fundraising: individual giving, corporate Founding Patrons and Development Board relationships, family funds with branded fundraising pages, and event-driven income anchored by the annual Duchenne Dash London-Paris cycling challenge (since 2013). All family-facing resources are provided free of charge. The charity operates exclusively within the United Kingdom and is governed by a board of trustees drawn from media (Channel 4 News), law (Chatham House, Clifford Chance), accounting (KPMG), advertising (BBH, Cheil, Grace Blue), and consumer brands (Jack Wills, Aubin), supported by high-profile celebrity and athlete patrons.

Name

Duchenne UK

Legal name

Duchenne UK

Website

https://duchenneuk.org

Company type

Private

Founded year

2012

Operating status

Operating

Headcount range

1–10 employees

Short description

Duchenne UK is a UK-registered charity funding Duchenne muscular dystrophy research and providing patient, family, and clinical support through programmes including the DMD Hub, DMD Care UK, Project HERCULES, and the Duchenne Dash fundraising event.

Ownership category

akta.pro rank

Product category

Muscular Dystrophy Charity and Patient Support Services

NAICS

Voluntary Health Organizations (813212)

akta.pro primary industry

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

akta.pro secondary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• DMD research funding
• Muscular dystrophy charity
• Clinical trial access
• Patient advocacy services
• Family support resources

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, Infrastructure

Revenue model

1. Donations and Fundraising: Individual donations, corporate donations, and fundraising events including the Duchenne Dash cycling challenge. Family funds allow supporters to create dedicated fundraising pages.
2. Corporate Partnerships: Development Board composed of Founding Patrons who provide donations, corporate support, connections and advice through regular giving.

Pricing tiers

Go-to-market motion3 records

Distribution channels4 records

Marketing channels6 records

Core offering

Duchenne UK is a registered UK charity that funds Duchenne muscular dystrophy (DMD) research through grants and scientific advisory review, and operates clinical research infrastructure including the DMD Hub to expand patient access to clinical trials. The charity also delivers family support resources (Family Folder, emergency preparedness items, educational guides, transition guides), runs community education events (Parent Information Days, the Duchenne Dash fundraiser), and conducts patient advocacy with regulatory bodies including the FDA, EMA, MHRA, NICE and SMC.

Product overview

Duchenne UK is a non-profit charitable organization (Registered Charity No. 1147094) focused on accelerating the search for treatments and a cure for Duchenne muscular dystrophy (DMD). The organization does not offer a traditional technology product but provides a portfolio of patient support services, educational resources, and research initiatives. Key offerings include: the Family Folder (comprehensive guide for newly diagnosed families), DMD Care UK (clinical care recommendations), DMD Hub (clinical trial capacity expansion), Project HERCULES (health economics research), Parent Information Days (educational events), educational support via Decipha partnership, emergency preparedness resources (Alert Cards, steroid wristbands), guides for adolescence/financial support, and the Duchenne Dash fundraising event. The organization funds research, collaborates with scientists and pharmaceutical industry, and works with health services to improve patient care throughout the UK.

Differentiator

Problem solved

Functional benefit

Brands

• DMD Care UK: A project to improve DMD care throughout the UK by providing clinical recommendations
• DMD Hub
• Project HERCULES

Products and services

• Family Folder for Newly Diagnosed Families

Quantifiable outcome

• Over £17 million spent on DMD research since 2012
• +2 more outcomes

Named customers4 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

Partnerships

Seven partnerships are on record, tiered core and minor.

• Action Medical ResearchcoreStrategic or Co-development PartnerPartnership to launch a new Research Training Fellowship opportunity in Duchenne muscular dystrophy, combining resources to support early-career researchers in the DMD field.
• DMD Care UKcoreStrategic or Co-development PartnerCollaboration to improve DMD care throughout the UK by providing clinical recommendations. Project includes launch of psychosocial guidelines for the Duchenne community.
• DMD HubcoreStrategic or Co-development PartnerDuchenne UK funds the DMD Hub to bring more UK patients the opportunity to take part in clinical research. The Hub expands clinical trial capacity for boys throughout the UK.
• Decipha CICcoreStrategic or Co-development PartnerPartnership to fund free educational support for young people with DMD. Decipha, a Community Interest Company run by DMD parents, provides assessments, specialist advice, training on SEN process including EHCPs, and dyslexia assessments.
• Pathfinders Neuromuscular AllianceminorStrategic or Co-development PartnerCharity run by and for adults with neuromuscular disorders provides support for teenagers and adults with DMD on issues such as independent living, housing, employment, and welfare rights.
• Project HERCULEScoreStrategic or Co-development PartnerCollaborative project to develop patient-centered outcomes and evidence for DMD treatments. Fleur Chandler from Duchenne UK chairs the Steering Group. Addresses health economics and patient-reported outcomes.
• FrankeminorGTM or Marketing PartnerCorporate sponsor whose funding has made Parent Information Days possible for Duchenne UK.

Scale indicators4 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Parent Project Muscular Dystrophy (PPMD): US-based DMD-specific patient advocacy and research-funding charity, the leading international counterpart to Duchenne UK. Directly comparable mission and model; Alex Johnson serves on its board.
• Muscular Dystrophy UK: UK charity funding research and providing support across all neuromuscular conditions, including DMD. Directly comparable as the closest disease-overlapping UK nonprofit; competes for the same donor and corporate-partner pool.
• United Parent Projects Muscular Dystrophy (UPPMD): International umbrella organisation connecting DMD parent organisations globally; Duchenne UK's co-founder Alex Johnson sits on its board. Comparable as the international coordinating body for DMD advocacy.
• CureDuchenne: US DMD-focused charity funding research and clinical trials, including gene therapy programmes. Comparable as a single-disease DMD research and access organisation operating at international scale.
• Duchenne Parent Project Netherlands: Long-established European DMD-focused patient organisation and part of the United Parent Projects Muscular Dystrophy network. Directly comparable disease-specific advocacy and research-funding model outside the UK.

Broad incumbents

• Wellcome Trust: Major UK-based biomedical research charity and grantmaker. Relevant as a benchmark for scale of UK health research philanthropy and a potential funder/collaborator for large-scale DMD initiatives.
• Action Medical Research: UK children's medical research charity and active Duchenne UK partner (co-launched a Research Training Fellowship in DMD). Overlapping mission in paediatric disease research funding at greater scale and broader disease scope.
• Muscular Dystrophy Association (MDA): Large US neuromuscular disease charity funding research across multiple dystrophies including DMD. Overlapping research-funding mission at much larger scale and broader disease scope.

Emerging players

• Pathfinders Neuromuscular Alliance: UK charity run by adults with neuromuscular conditions providing transition/adult support; Duchenne UK partner. Comparable as a niche UK neuromuscular patient-support organisation, focused on a different life stage.
• Decipha CIC: UK Community Interest Company run by DMD parents providing educational assessments and SEN/EHCP support; Duchenne UK partner. Comparable as a complementary service provider in the DMD support ecosystem.

Market position

Strengths5 records

Weaknesses4 records

Competitive moat6 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/DuchenneUK
• YouTubeyoutube.com/embed/uR0Z48Uy5bU?rel=0&hd=1&modestbranding
• LinkedInlinkedin.com/company/duchenne-uk
• Facebookfacebook.com/duchenneuk

Revenue estimate

Valuation estimate

Number of profiles

Profiles8 records

Funding overview

Funding rounds

Investors

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M&A

Investments3 records

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

Frequently asked questions about Duchenne UK