Charcot-Marie-Tooth UK

What Charcot-Marie-Tooth UK does

Charcot-Marie-Tooth UK (CMTUK) is a UK-registered charity founded in 1986 and headquartered in Bournemouth that provides support, information, membership services, research funding, and education for people affected by Charcot-Marie-Tooth disease, a hereditary peripheral nerve disorder. The charity operates a community-led model serving an estimated 25,000 diagnosed patients in the UK, with persona coverage spanning patients, families, carers, parents of children with CMT, and healthcare professionals. Its core product is a donation-based membership scheme granting access to the ComMenT newsletter, support networks, events, and member benefits; supporting products include Regional Support Groups across eight UK regions, dedicated Carers and Parents & Guardians Support Groups, the CMT Kids and CMT Big Kids programs, an annual conference, an Information & Support helpline, and an online merchandise shop. CMTUK funds research, including a £40,000 commitment to the UK CMT Register and prior foot and ankle surgery research at the Royal National Orthopaedic Hospital.

The underlying technology stack is conventional and non-proprietary: a WordPress-based website with a member portal, payments processed through PayPal and SmartDebit (PCI DSS compliant), donations handled via the Enthuse fundraising platform, member communications via the E-ComMent newsletter system, online support groups delivered through Zoom, and traffic analytics through Google Analytics. There are no proprietary technology assets, mobile applications, or AI components disclosed.

The revenue model is entirely donation-driven: voluntary donations, donation-based annual membership subscriptions, fundraising initiatives (including a 'gift of hope' campaign and DIY fundraising), and merchandise sales. The organization explicitly does not receive government funding and operates with a small staff of 1–10 employees. Distribution and engagement occur through a multi-channel mix — website, Facebook, LinkedIn, Instagram, YouTube, email newsletter, regional in-person and online events, annual conference, and e-cards — all targeting the UK patient community. Partnerships include the European CMT Federation, Neurological Alliance, Genetic Alliance UK, NeurAlliance of Scotland, and Dorset Orthopaedic as a conference sponsor.

Name

Charcot-Marie-Tooth UK

Legal name

Charcot-Marie-Tooth UK

Website

https://cmt.org.uk

Company type

Private

Founded year

1986

Operating status

Operating

Headcount range

1–10 employees

Short description

Charcot-Marie-Tooth UK (CMTUK) is a UK donation-based charity, founded 1986, that provides support, information, membership services, research funding, and education for people affected by Charcot-Marie-Tooth disease, serving patients, families, carers, and clinicians across the UK.

Ownership category

akta.pro rank

Headquarters

HQ city

Bournemouth

HQ country

United Kingdom

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations: CMTUK is entirely funded by the generosity of members and supporters through voluntary donations. The organization does not receive government funding and relies entirely on public generosity.
2. Membership Subscriptions: Annual membership subscriptions offered on a donation basis, providing access to resources, support networks, events, exclusive member benefits, and publications including the ComMenT magazine.
3. Fundraising Initiatives: Various fundraising activities and campaigns, including the annual gift of hope campaign and do-it-yourself fundraising options for supporters.
4. Merchandise Sales: Online shop selling merchandise to supporters, with proceeds supporting the charity's work.

Pricing tiers

Go-to-market motion2 records

Distribution channels4 records

Marketing channels9 records

Core offering

Charcot-Marie-Tooth UK (CMTUK) is a donation-based UK charity that provides support, information, membership services, research funding, and education for people affected by Charcot-Marie-Tooth disease. Its core offering is a donation-based membership scheme granting access to the ComMenT newsletter, regional and specialist support groups, CMT Kids and Big Kids programs, an annual conference, and a £40,000 commitment to the UK CMT Register. The organisation does not receive government funding and depends entirely on voluntary contributions, fundraising, and merchandise sales.

Product overview

CMTUK is a donation-based UK charity offering a unified support ecosystem for people affected by Charcot-Marie-Tooth disease. The core offering centers on membership providing access to the ComMenT newsletter, resources, and community. The organization facilitates multiple support channels including Regional Support Groups across UK regions (North East, North West, West Midlands, East Midlands, Scotland, Gloucestershire, London & Kent), a dedicated Carers Support Group, and a Parents & Guardians Support Group, all conducted via Zoom. Special programs include CMT Kids for children and CMT Big Kids for young adults, featuring family day trips and residential weekends. Annual conferences bring together patients, families, clinicians, and researchers. CMTUK also funds research including the UK CMT Register (£40,000 commitment) and has previously funded foot and ankle surgery research at Royal National Orthopaedic Hospital.

Differentiator

Problem solved

Functional benefit

Products and services

• Membership Scheme A donation-based annual membership scheme granting access to resources, support networks, events, exclusive member benefits, ComMenT newsletter, and AGM mailings for people affected by CMT.
• ComMenT Newsletter Quarterly member newsletter covering fundraising stories, CMT Kids updates, research news, and community content, distributed to CMTUK members via the E-ComMent electronic newsletter system.
• Regional Support Groups (RSG) Online and in-person support group meetings held across UK regions including North East, North West, West Midlands, East Midlands, Scotland, Gloucestershire, London & Kent, and South East, providing localised peer support for people affected by CMT.
• Carers Support Group Monthly online support group for carers of people living with CMT, offering a welcoming space to connect, share experiences, and support one another.
• Parents & Guardians Support Group Online support group for parents or guardians of children under 18 living with CMT, providing a space to connect and share experiences.
• CMT Kids Program Program providing fun, safe spaces for children and young people with CMT to connect, share experiences, and build friendships, including family day trips and dedicated trustees.
• CMT Big Kids Program Support program for young adults with CMT, including residential weekends and social activities such as the Big Kids Weekend at Bendrigg Trust.
• Annual Conference Annual conference bringing together patients, families, clinicians, and researchers, featuring expert speakers, research updates, podiatry and physiotherapy sessions, and community networking.
• Information & Support Helpline Helpline and enquiry service providing support to people affected by CMT, available via phone (0300 323 6316) and email ([email protected]).
• Online Shop / Merchandise Online merchandise store offering items to supporters, with proceeds supporting the charity's work.
• E-Cards Electronic greeting cards available through DontSendMeACard.com, allowing supporters to send charity e-cards including Christmas cards with proceeds supporting CMTUK.

Quantifiable outcome

• 40 years of continuous operation supporting the CMT community in the UK

Named customers3 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

Integration9 records

Partnerships

Six partnerships are on record, tiered minor and core.

• Dorset OrthopaedicminorGTM or Marketing Partner · 25 April 2026Conference sponsor for the CMTUK 40th Anniversary Conference 2026, providing support to help bring the CMT community together.
• European CMT Federation (ECMTF)coreStrategic or Co-development PartnerCMTUK is partnered with the European CMT Federation, a European-wide organization coordinating efforts to support people with CMT across the continent.
• Neurological AlliancecoreStrategic or Co-development PartnerCMTUK is a member of the Neurological Alliance, a coalition of organizations working to improve neurological care and services in the UK.
• Genetic Alliance UKminorStrategic or Co-development PartnerPartnership with Genetic Alliance UK, an organization supporting those affected by genetic conditions.
• NeurAlliance of ScotlandminorStrategic or Co-development PartnerPartnership with NeurAlliance of Scotland for coordinating neurological support efforts in Scotland.
• Fundraising RegulatorminorOthersRegistered with the Fundraising Regulator, demonstrating commitment to ethical fundraising practices and compliance with industry standards.

Scale indicators4 records

Recent moves6 records

Expansion highlights4 records

Broad incumbents

• Muscular Dystrophy UK: UK charity supporting people with neuromuscular conditions including several genetic peripheral nerve disorders. Directly comparable as a UK-based donation-funded charity providing support, research funding, and information services — but operating at much larger scale and across a broader disease portfolio.
• Neurological Alliance: UK coalition of more than 100 neurological organizations. CMTUK is a member; comparable as a convening/advocacy body but operating as a meta-charity across many conditions rather than a single-disease service provider.

Direct peers

• Genetic Alliance UK: UK national charity supporting those affected by genetic conditions. Listed as a CMTUK partner, and the closest operational peer as it runs a similar model of support, advocacy, and research funding — but across many genetic conditions rather than focusing on a single disease.
• Ataxia UK: UK charity providing support, information, and research funding for people affected by ataxia, another progressive hereditary neurological condition. Closely comparable in mission, donation-funded operating model, regional support groups, and research funding activities.
• CMT Research Foundation: US-based research-focused non-profit dedicated to Charcot-Marie-Tooth disease. Highly comparable disease focus and donation-funded research funding model; CMTUK complements its work on the European/UK side through the UK CMT Register and related grants.
• European CMT Federation: European-wide coordinating body for national CMT patient organizations. CMTUK's direct partner and the closest structural peer at a continental level — coordinating national charities with similar service models, research agendas, and advocacy positioning.

Emerging players

• Nerve Pain UK: UK charity offering information and support for people affected by peripheral neuropathy, including CMT-related neuropathies. Comparable as a peer support and information provider in the UK neuropathy space but covering a broader condition umbrella.

Regional players

• Hereditary Neuropathy Foundation: US-based non-profit focused on Charcot-Marie-Tooth disease specifically. Provides a direct international peer view on CMT-specific programs, research funding, and patient community-building — analogous to CMTUK's mandate but operating in the US healthcare and donor environment.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights5 records

Customer concentration

• YouTubeyoutube.com/@CMTUnitedKingdom
• Facebookfacebook.com/CMTUK2
• LinkedInlinkedin.com/company/cmt-united-kingdom
• Instagraminstagram.com/charcotmarietoothuk

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

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 Charcot-Marie-Tooth UK