What Action Duchenne does

Action Duchenne is a UK-registered charity (Charity No. 1101971, Scottish Charity No. SC043852) founded in 2001 to support families affected by Duchenne muscular dystrophy (DMD). Headquartered in Bristol with a 23-person team, the organisation operates a community-led, donation-funded model providing free services from diagnosis through bereavement. Its core offerings include dedicated Support Officers accessible via phone, video chat and WhatsApp; an 8-session online group counselling programme; peer support groups segmented by family role (Dads Against Duchenne, Time Out for Mums, Grandparents Together); age-segmented youth programmes (Mighty Minds, Trailblazers for ages 11-16, Yes I Can for 16+); a School Support Programme providing assemblies, staff training and EHCP support; an annual Community Summit (formerly International Conference) that drew 317 attendees in 2025; a Summer Family Days programme; and the Bite-Sized Duchenne Science educational video series covering genetics, signs, symptoms, and inheritance.

The underlying technology layer is conventional digital communications: a website (actionduchenne.org), monthly email newsletter, social media presence (Facebook, Twitter/X, LinkedIn, WhatsApp), webinar hosting with on-demand recordings, and digital video content. The organisation historically operated the DMD Registry — established in 2006 as the first UK patient registry for Duchenne — but is now in the process of winding down and transferring registrants to a more advanced registry operated by partner charity Duchenne UK, with a 20 April 2026 data-decision deadline.

Revenue is generated entirely through donations, grants, fundraising events, corporate sponsorships, and regular giving (Friends of Action Duchenne monthly programme). Corporate support is diversified across five pharmaceutical partners (Pfizer, PTC Therapeutics, Roche, Sarepta Therapeutics, GWF) for specific educational projects, plus HM Government funding via the National Lottery Community Fund. No fees are charged for any direct family service. Geographic scope is the United Kingdom only, with no international operations disclosed.

Name

Action Duchenne

Legal name

Action Duchenne

Website

https://actionduchenne.org

Company type

Private

Founded year

2001

Operating status

Operating

Headcount range

11–50 employees

Short description

Action Duchenne is a UK-registered charity founded in 2001 that provides free support, education, and advocacy services to families affected by Duchenne muscular dystrophy from diagnosis through bereavement. It operates 23 staff and is funded entirely by donations, grants, and corporate sponsorships.

Ownership category

akta.pro rank

Product category

Patient Support and Rare Disease Charity Services

NAICS

Voluntary Health Organizations (813212)

SIC

Services-Health Services (8000)

akta.pro primary industry

Palliative Care, Hospice & Serious Illness Support (BPAGACAK)

akta.pro secondary industry

Movement Disorders (Parkinson’s, Tremor, Dystonia) (HLAKAIAC)

Keywords

• Patient support services
• Muscular dystrophy charity
• Community peer support
• Bereavement counselling
• Patient registry

Headquarters

HQ city

Bristol

HQ country

United Kingdom

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Fundraising: The charity relies on donations from individuals, corporate sponsors, and fundraising events. They offer regular giving programs (Friends of Action Duchenne), one-time donations, event-based fundraising, and memorial donations. They also receive pharmaceutical company funding while maintaining transparency policies.

Go-to-market motion2 records

Distribution channels4 records

Marketing channels8 records

Core offering

Action Duchenne is a UK registered charity that provides free support services, educational programmes, and community resources to families affected by Duchenne muscular dystrophy (DMD) from diagnosis through bereavement. Its core offerings include dedicated family support officers, peer support groups, expert-led webinars, an annual community summit, school engagement programmes, end-of-life and bereavement support, and a transitioning DMD patient registry.

Product overview

Action Duchenne operates as a charitable organization offering a portfolio of support services, educational programmes, and community resources for families affected by Duchenne muscular dystrophy. The organization does not offer a traditional technology product but provides service-based offerings including: the Webinar Series 2026 (expert-led educational webinars), Bite-Sized Duchenne Science (Science Live Video Project for accessible science education), comprehensive Family Support Services with dedicated Support Officers, various peer support groups (Time Out for Mums, Dads Against Duchenne, Grandparents Together), an Online Group Counselling Programme, children and youth programmes (Mighty Minds, Trailblazers, Yes I Can), School Support Programme, the annual Community Summit conference, End of Life and Bereavement Support, the DMD Registry (now transitioning to Duchenne UK), and the Friends of Action Duchenne regular giving programme. These services work together to provide support from diagnosis through the entire Duchenne journey, including bereavement support.

Differentiator

Problem solved

Functional benefit

Products and services

• Webinar Series 2026 An annual programme of free, expert-led educational webinars covering diagnosis, education, mental health, caring, identity, grief, and future planning for the DMD community, with recordings available for later viewing.
• Bite-Sized Duchenne Science (Science Live Video Project) An educational video series delivering accessible science education on Duchenne facts, signs and symptoms, diagnosis, genetics, and inheritance, designed to empower families with knowledge to make informed decisions.
• Family Support Services Comprehensive direct support including dedicated Support Officers, specialist guidance on health and benefits, transition support, and access to peer networks and support groups for parents, carers, and individuals affected by Duchenne.
• Time Out – A Space for Mums Monthly support group providing a safe space for Duchenne mums to connect with others who understand their experiences, share challenges, and provide mutual support.
• Dads Against Duchenne (DAD's Group) Monthly informal support group for fathers and male carers to relax with others in similar situations, providing peer support and community connection.
• Grandparents Together Monthly support group for grandparents providing a safe space to ask questions, share experiences, and build understanding of Duchenne alongside others who truly understand.
• Online Group Counselling Programme An 8-session online group counselling programme facilitated by a professional counsellor, covering aspects of life with Duchenne such as anxiety, anticipatory grief, and coping strategies.
• Children and Young People Programmes (Mighty Minds, Trailblazers, Yes I Can) Age-tailored programmes for children and young people living with Duchenne, including Mighty Minds (younger children, creative activities and games), Trailblazers (ages 11-16, social connection and challenges), and Yes I Can (ages 16+, transition to adulthood support).
• Summer In-Person Family Days Free family fun days held across the UK during August 2026, with some events hosted at science centres and featuring science education workshops, providing opportunities for families to connect with each other and the support team.
• Action Duchenne Community Summit Annual community summit bringing together Duchenne families, clinicians, therapists, researchers, pharmaceutical companies, and individuals living with Duchenne for shared learning, connection, and support, featuring multiple content streams, expert sessions, and peer connections.
• School Support Programme Comprehensive support for schools including whole school assemblies, interactive classroom activities, staff training, EHCP support, and working with local authorities to increase understanding of Duchenne.
• End of Life and Bereavement Support Support services for families following bereavement, including information about bereavement and grief support organisations, grief resources, anticipatory grief support, and end-of-life planning assistance.
• DMD Registry Patient registry for Duchenne in the UK, established in 2006, which has historically facilitated clinical trial recruitment. The registry is transitioning to Duchenne UK with data transfer options for existing registrants.
• Friends of Action Duchenne (Regular Giving Programme) Monthly giving programme allowing supporters to contribute regularly, providing financial stability for planning and enabling the charity to support families from diagnosis through bereavement.

Named customers1 record

Segments5 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Six partnerships are on record, tiered core and minor.

• Burleigh Court Conference Centre (Loughborough University)coreStrategic or Co-development PartnerAccessible venue partner for the 2026 Community Summit. The hotel holds Mobility 3 accreditation and is experienced in hosting events for delegates with accessibility requirements, including being a regular venue for the British Paralympic Association.
• Winchester Science CentreminorStrategic or Co-development PartnerHost venue for Summer 2026 Family Day and Science Education Workshop, providing interactive science experiences for DMD families.
• Newcastle Life Science CentreminorStrategic or Co-development PartnerHost venue for Summer 2026 Family Day and Science Education Workshop, featuring dinosaur exhibits and space zone activities.
• Birmingham Think Tank MuseumminorStrategic or Co-development PartnerHost venue for Summer 2026 Family Day and Science Education Workshop, offering interactive science and planetarium experiences.
• Duchenne UKcoreStrategic or Co-development PartnerPartnership for DMD Registry transition. Duchenne UK has developed a more advanced registry, and Action Duchenne is working with them to transfer family data to ensure continued support and research participation.
• Local Education AuthoritiesminorStrategic or Co-development PartnerPartnerships with local authorities to increase understanding of Duchenne in schools and support appropriate educational provision for students with DMD.

Scale indicators5 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Cure Duchenne: US-based DMD-focused nonprofit combining family support with research funding. Comparable mission of accelerating treatments and supporting affected families through education and community programs.
• Parent Project Muscular Dystrophy (PPMD): US-based nonprofit focused exclusively on Duchenne, founded by parents. Closely comparable in community-led model, family support programs, and educational content offerings; geographic peer operating in North America.
• Duchenne UK: UK-based Duchenne-focused charity with a stronger research funding mandate. Direct competitor — currently absorbing Action Duchenne's DMD Registry as it transitions to a more advanced Duchenne UK registry, signaling overlap in patient recruitment and donor pools.

Broad incumbents

• Muscular Dystrophy Association (MDA): Large US-based nonprofit covering muscular dystrophy broadly. Comparable through disease-community support services and research funding, but broader scope and significantly larger scale than Action Duchenne.
• AFM-Téléthon: France's leading neuromuscular disease charity, with annual Téléthon fundraising event. Comparable through neuromuscular disease focus, patient advocacy, and major fundraising infrastructure.
• World Duchenne Organization: International umbrella organization advocating globally for people with Duchenne. Comparable mission of supporting the global DMD community, but operating at a federated international level rather than direct family services.
• Muscular Dystrophy UK: UK's leading charity for all muscular dystrophies including Duchenne. Comparable through overlapping disease community and UK-only scope, but broader in coverage across neuromuscular conditions rather than DMD-specialist.

Emerging players

• Jett Foundation: US-based DMD-focused nonprofit providing family support, advocacy, and community programs. Comparable community-led model, though smaller in scale than PPMD or Cure Duchenne.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• LinkedInlinkedin.com/company/action-duchenne

Revenue estimate

Valuation estimate

Number of profiles

Profiles8 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Action Duchenne